DOING THINGS WELL
The great thing about meeting people for the first time is learning all about the things they are interested in and the things they can do well. Unfortunately for people with disabilities people have a tendency to focus on what doesn’t work instead of what does. anonymous
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STEP FORWARD
My question is to all the goodhearted people who advocate for a better quality of life and a level playing field for those differently abled: where are you? anon
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REDEFINING CARE
Deepwellians have a rare opportunity to redefine what they mean by health, healing and caregiving. If they succeed, theirs could represent a new model that could help “heal” the currently ailing health care systems in the United States at a time when the national government seems to have the political will, and a rare window, to attempt serious reform of health care nationally. Integral CG
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TRULY DREADFUL
I truly wish America would see how dreadful our health care system is and how it treats people. I wish that even though the majority of people feel this way, that we could actually do something about it. Jenelle O’Neill
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CHOOSING
We all have those moments in life when we are somehow helped in a time of need from someone that crosses our paths with no other agenda that to be kind and helpful and caring. No price tag, no alterior motives, nothing except a sweet spirit. We can choose how to move about in our lives. chalkdustlady
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THE ABILITY TO SHARE
There are lots of discussions about caring going on but from my point of view caring really starts with EMPATHY. Regardless of one’s circumstances in life, the ability to share another’s emotions and feelings is at the center of caring right – and of living a truly engaged life. Empathy lets you put yourself in someone else’s shoes. It leads to caring right and it leads to giving. penny
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TRUE MEANING
At the age of 58 my grandmother was diagnosed with Alzheimer’s Disease. It was a painfull downhill process that not only affected her but the entire family… Caring for her taught me the true meaning of love, life and dedication. I carry her energetic spirit and love in my heart always. Debbi Norwood
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DISCOVERING
Having to manage the logistics of not only my life, but also my mom’s, I’ve learned the meaning of anxiety and depression on different levels. It’s been a fascinating trip to discover and learn things about my mom, her injury and life experiences exclusive to her stroke. ellenandtim
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DOES WELL FOR HERSELF
one of my freinds who lives in mass has cp, she gets around. she is my best friend I care about her as a friend. she does well for herself the best she can her name is karen. she works also has Epilepsy. JillEJudson
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PAYING FORWARD
My parents insisted on mainstreaming me several decades before inclusion was even conceptualized. As a result, I received two doctoral degrees and am the successful advocate for the implementation of Speech-to-Speech phone services for people with speech disabilities. Because of the caring that I’ve received, I have been able to provide care through my work on telephone access. Dr. Bob Segalman
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HEALING PARTNERSHIP
In response to Missy Snow’s question about an example of holistic care and the intersection of theory and practice, I think one model that Deepwell might look to is Duke Integrative Medicine at Duke University. The Duke Integrative Medicine Model offers a collaborative care model — a healing partnership — between professionals and patients to achieve patient goals, “integrating the very best conventional medicine has to offer with proven-effective complementary therapies” delivered by their expert clinicians. Integral CG
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DIGNITY
Full time care is frustrating because there just are not things put in place for family care givers, including the active participation of siblings. It is difficult because while those around you are grieving the loss of someone’s health, or personality, or the person they knew, you the caregiver cannot do this. Your job is to keep this person moving forward, cheerful, safe, and feeling like even though their capacity to function has diminished that what they say and do are of vital importance, and what they do are needed actions. Their dignity is first and foremost. chalkdustlady
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SIMPLY BEING THERE
For many people who are having a challenging time, simple contact with other humans can make an enormous difference in maintaining a positive attitude, living otherwise difficult lives. Simply being there is often the most powerful kind of care, but it’s often limited by time and distances between. Now modern technologies are improving our capabilities to overcome these obstacles and be there for each other. Family Man
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THE SMART HOUSE
Technology will lead the way in caring for the elderly, disabled and others who might need assistance. I foresee a smart house. A house that will know where the occupant is at all times. The occupant can wear a watch and they will monitor his vitals and send that information wirelessly to a doctor at his office. If the person falls “and can’t get up” the house will send an emergency notice to his doctor and the ambulance crew… If a person walks away from a burner in the house and forgets to turn it off, it turns itself off… and the doctor is notified of the occurrence. Even little “iRobot Roombas” and other inventions will help keep the place clean so the person doesn’t have to exert themselves to clean up after themselves. Will Hull
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TECHNOLOGIZING THE PARADIGM
A great deal of the current discussion and debate about the future of health care surrounds Health IT — the implementation and application of technology to help cure our health care ills. The problem with putting the focus on Health IT is twofold: (1) it frames much of the health care reform discussion in terms of “technologizing” the existing paradigm without adequately challenging the assumptions and foundations on which that paradigm operates; and (2) it distracts us from a more fundamental inquiry about the limits of the current health care model in terms of achieving the goal of healing, with a clearer shared understanding of what healing really means, or should mean, to us. Integral CG
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AFFINITY GROUPS FOR PARENTS
Large corporations have “affinity” groups- diversity around race, or vision, etc. why not one around caring for parents. FMLA is great for a one time emergency situation or a one time planned situation; but not so much for dealing with long-term; perhaps life-long issues around caring. anon
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SPREADSHEET IT
My close friend Terri had surgery to remove a cancerous tumor. Another friend got us all organized – she blasted out a spreadsheet of dates and supportive activities and we all signed up for something. All those meek intentions “if there’s anything I can do to help just let me know” were brought to light. What if Deepwell could get organized like this on a large-scale basis? klinds1
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THREE SMALL ACTS TODAY
An email from a friend expressing thankfulness for my presence in his life, a chocolate bar and a hug from a co-worker, a handmade card from one of my sixth grade students letting me know that I’m a great teacher – each one of these caring actions has filled me with joy and inspired me to share similar acts of love with others in my life. I hope and pray that each of us may realize the amazing power hidden in small acts of caring and kindness to change the world around us. And I wonder – what are three things you can do today or tomorrow to bring a smile to someone’s heart? Hilary
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HELPING THOSE HELPING
If you were to bring all the givers together, they would know that after someone has helped them they in return need to help another. If you and your family are benefiting from a program of volunteers, you in return could be the volunteer for them… The incentive comes from the heart knowing you are helping those who are helping you. d_j_foote
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GOOD CONCEPT
I’ve worked in a variety of mental health settings, and one of the most rewarding and frustrating places has been a group home. The concept is a great one: individuals with similar disabilities live together as a sort of makeshift family of their own. Unfortunately, I’ve yet to come across any group home without its share of horror stories. Sarina
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WE KNOW BETTER
Despite most people’s actual experience of their own free will and various levels of consciousness, which they might define in terms of spirituality or energy, the scientific method on which conventional western medicine is based only acknowledges illness and treatment on the physical level of a person. As Wilber explains, “The ‘Cartesian’ problem in the conventional practice of medicine is simply that you are basically forced to treat a patient as if he or she were a physical machine, when both of you know otherwise.” Integral CG
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IT TAKES A VILLAGE
My grandma was not sent to a nursing home — my family took care of her, since the whole family lived together in one house. My family also lives in a very small town, so the local community knew about her situation. In case she ran away (which happened several times), a neighbor called my mum and said, “Hey, she´s down the street, I will watch her ’til you arrive.” anonymous
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SAFE HARBOR
What has this to do with Deepwell? Maybe you could [do a similar Safe Harbor program] for children, lost/confused seniors, sudden onset of medical problems, or challenged residents in sudden need of a rest. Volunteers could be recruited to train “safe harbor masters” in what they can and cannot do (medically and legally)… Maybe it could have saved the woman who died from exposure a year or so back. Raven
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STRUGGLING WITH SUPPORT
Michelle struggled from the beginning. If we were able to pay more at the start it wouldn’t have cost so, so much in the long run. Medical insurance and wrong medical decisions. [This country has] the best medical if you can afford it. We have a lot of suffering people because of paper work and $$$. d_j_foote
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DIGNITY AND GRACE
My 87 year old grandmother continues to live in her third floor corner apartment with the constant sunshine she loves. She is one of the lucky few that has her family around to watch over her. This is what allows her to still live by herself. I don’t think that she quite realizes the sacrifices that my mother (who lives 1/2 hour away from her), my aunt (15 minutes away) and me (five minutes away) are the reason that she is able to still live so independently. We watch over her lovingly and willingly because she has done the same for all of us throughout her whole life. She deserves to live her last years gracefully. jmswanson
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HEY DENTISTS
Hey all you dentists out there… in consideration of many elderly have ill fitting dentures, teeth in terrible shape, or no dentures at all, there has to be a way to put teeth in the mouths of the people that worked so hard to pay taxes that eventually found their way to pay for your student grants and loans. chalkdustlady
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THE MEDICARE JOKE
Rehab – that was a joke, there was only billing Medicare. Those who were supposed to be getting help were usually parked at the nurses station. I ended up taking Ma home every day and bringing her back for the rehab session. If I had known I would have kept her home and hired someone to come in and work with her. Modined
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ACHIEVEMENT
My son and daughter-in-law are just so so smart and strong– whatever humanly is possible for Julia they will seek out and provide for her. They are assertive and forward thinking. None of us knows what our children (or even ourselves) may be able to achieve, but we have expectations that may be practically realized… I wish I knew how we could better help them. anonymous
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REALLY REALLY SORRY
An intake of breath on the other end of the phone, “Ma’am, I’m really sorry…” “Yes, I know,” I say at the fraying end of my rope, “You’re sorry. This is the company’s policy and not your own. I don’t blame you. I blame the stupid system that says that bathing my son is a luxury. A Lexus is a luxury item. Bathing is a part of life.” Back to the drawing board. Jenelle O’Neill
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SHARING THE CARING
At our office we had a colleague with a disability who required a personal assistant in the morning and at night. When that personal assistant was on vacation, several of us would take turns doing the morning or evening support at our colleague’s home. It didn’t take a big commitment of time for any one person; so SHARING the caring made it easy for folks to say yes. anonymous
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THE RIGHT TOUCH?
He will talk about the stuff that gets him down, and sometimes i’ll tell him about the stuff i’m depressed about, and i am starting to try to push touching between us in an assuring way. Does anyone else feel like if we welcomed physical contact between friends of any sex/gender/whatever, that we may care about each other more? Caitlin
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THE LOST ART OF ENOUGH
We all took care of each other… having it all was not important, HAVING ENOUGH was…. Corporations weren’t wasting billions in bonuses, making sure investors had record dividends… they kept the community they were in working, and that money kept the business working, and they all worked together to build the community. A LOST ART. chalkdustlady
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LITTLE MIRACLES
Now, on a normal day in the life of siblings, the kid with the healthy toe would have stepped alone into the sunshine and rode off on his bike, but today a miracle of CARING happened. They struck a deal! Our 4 year old spent the entire morning pushing his kid brother up and back on the driveway, asking him if he needed anything, if the sun was in his eyes and if he wanted to be the “boss” of a box of crackers. By lunchtime the toe was cured (by caring) and they were both running and laughing through the yard like it never happened. anonymous
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KIDS KARE
Get all of the school children in Deepwell personally involved in some caring activities that will really help the community. The schoolchildren sign up for one task a week for one “needy” person. Young children are accompanied by a parent or another adult. The “needy” person provides a grade to the school regarding the effectiveness and level of compassion shown by the schoolchild. Students’ grades are monitored with the goal of “all A’s” for each class. klinds1
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ASSURANCE
Hawaii Ten-O was an effort by a bunch of Canadian kids to make random people in one state feel good about themselves, even temporarily. What does all of this have to do with Deepwell? People need that assurance, even if it comes from a stranger. Sometimes especially when it comes from a stranger; it can feel forced when it comes from someone you know. Knighthawk
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GOOD CITIZENSHIP
I was just reading beinglucas’s post about getting kids at school involved in food drives and such. I’m really surprised this isn’t going on already. I used to work at an elementary school where most of the students lived in public housing and were fed dinner each school night through a program organized by the local food bank. And even that school had canned food drives, winter coat drives, toy drives, can recycling and penny drives for charitable organizations. It’s just part of teaching citizenship. jasper
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CATALYZING CHANGE
It is easy to use children and elderly as catalysts for change. Those in the middle of those age groups are usually the facilitators and get a good sense in knowing that they are helping their kids ‘grow-up great’ and the elderly continue to live with dignity because caring activities are things they’ve participated in for their whole life. So my question and story is, When will this middle group catalyze themselves. anonymous
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SUPPORTING THE CAREGIVERS
In my opinion (and I’ve thought this for a while), in order for a group home to be a happy one for everybody, there needs to be some sort of support for the people who work hard to keep it running smoothly. Perhaps a support group for caregivers? Sarina
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IT SHOULD BE CAKE
Communication is something vital to caring, something impossibly important. If you want people to care about one another, they need to know one another. I’ve learned everything there is to know about a person through words alone; we were together for six months before I first touched her in an airport. But if two people can learn to care about each other so incredibly deeply from over 600 miles away using words alone, it should be cake for a town to learn to care when they can shake hands in a bank, exchange a quick high five, or give someone a hug. Knighthawk
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WE ALL HAVE DISABILITIES
The great thing about people is everyone of us is different. We all have skills, abilities and knowledge about things we enjoy and/or are interested in. We all have disabilities too. Some of us are better at “hiding” our disabilities from others but we all have them. anonymous
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A MORE AUTONOMOUS PLACE
My grandma is often lonely, stir crazy, and frustrated by her lack of mobility, and I feel that a more active community and available care system could be good for her, but her innate desire to live on her own refutes this. Why do the two have to be mutually exclusive? In the future, I feel we could create a less illness- or death-centered elderly community, much like the gated communities we build for families. It wouldn’t be hard to build a more autonomous place for elderly people to live together but separate and be self-sufficient and in a community, without the stigma of inevitable death and dependence that is commonly attached to such places. Lisa Mumbach
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FENCES, GATES
So one can see that a simple act of erecting a fence to most of us in the current flow of things gives cause to much uncertainty, fear, insecurity and fuels a lack of trust and resistance, causing more pain and fear and uncertainty, endlessly, until… I realized that really, I too need a little space to myself and I think everybody else does too… I am building a fence to let others know that I need a little space to breathe in, for my own health and sanity, and there will be a gate, and this gate is to let people in! anonymous
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PHYSICAL AND VIRTUAL
Because I am constantly traveling in support of the career choices I’ve made, it’s tough making lasting connections with people in the real world – which is why I’ve been seeking out friends in the virtual space of the internet lately. It’s easier for me to care about the people in your little town because, like most of the online friends I’ve made, I’ll never have to interact with them face to face. That’s not to say that the actions taken in the virtual world can’t have a real impact in the physical one. Projects like Ruby’s Bequest have a real potential to bridge caring between the virtual and the physical worlds. Martin Aggett
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HELPING THOSE WE DON’T KNOW
What struck me about the experience is how personal to her that solution was – and even a few months ago, I wouldn’t have known what to do. But it also makes me wonder: How we can move from understanding what the people close to us need to helping people we don’t know well? bkreit
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SAVE THE CHILDREN
We had no idea that so many wrong things were happening with our system, until we became foster parents. I have written a book about it. My book gives details and accounts about the things that go on in our system and the struggles and heartaches that my family and I went through trying to save these children. There are some laws that really need to be changed, for the sake of all our children. advocate56
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A WHOLE LOT MORE
I AM THE WIFE WHOSE SPOUSE HAS ALZHEIMERS. HE IS GOING TO BE 62 IN SEPTEMBER AND I HAVE BEEN TAKING CARE OF HIM FOR ABOUT 4 YEARS. I HAD TO QUIT MY JOB LAST MARCH TO STAY HOME AND TAKE CARE OF HIM. SO ANYONE WHO IS A CARE GIVER I KNOW WHERE YOU ARE COMING FROM. THE GOVERNMENT SHOULD PAY US TO TAKE CARE OF OUR FAMILY WHEN THEY ARE LIKE THIS BECAUSE IT WOULD COST A WHOLE MORE TO PUT THEM SOMEWHERE ELSE. DON’T GET ME WRONG I LOVE TAKING CARE OF MY HUSBAND BUT SOME DAYS IT IS REALLY STRESSFUL. LOL TO YOU ALL. anonymous
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BURDENS
For me, I don’t want to be a “burden” on my kids, I want them to live their lives and I want to live mine. I also don’t want to live in a nursing home when I get older. With a smart house, this may be a possibility. Will Hull
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AN AMAZING CONNECTION
Jim’s – well – ornery is the nicest way to describe him. He’s cynical, his opinions about just about everything differ from mine, he’s bitter and understandably enough, this 92-year-old man is angry at the universe. But the amazing thing is that, over time, I’ve grown so, so very fond of this guy. I listen to him, I try to see the world from the perspective of a man who is alone in life, a man who flew bombing missions from England in the second world war, a man who was possibly somewhat dashing, who travelled, who loved, who knew what loss is. oaklandfiddler
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I DID NOT WANT HER TO GO
After two weeks, she passed. I was never so empty in my life. It was life changing. I felt like a shell with nothing within. Hollow. Tears are flowing now as I tell the story so I guess after a year and a helf, I am still not over it. She was 93 and my head said she has had a good life, but my heart did not want her to go and misses her. Modined
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WESTBOUND
When a hobo dies, it’s said he caught the westbound freight. I stood on the back step and watched the sun setting in magnificent colors below the western horizon. I hadn’t felt that close to my mom in quite awhile as I said adeau to her spirit flying off in that direction… Felt really blessed to be the closure of that circle. newfinyankee
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DISPLACED
And me? I am a stranger in a strange land. A displaced Mainer, an Irish Lass amongst the Finns. I will be paying off the expensive but very modest funeral we provided for him. Of course he had no life insurance. The Veterans Administration paid $600 and the Social Security allowance of $255 death benefit were paid, and I sold every item of gold jewelry I could find. Ruth
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BACK TO BASICS
When was the last time someone just cooked a little extra and brought it to the neighbor that is elderly, has been ill, has lost of loved one….. a plate of cookies for the person that lost their pet, failed an important test, got bad news…. and maybe with the cookies a hug and words that told that person someone noticed and cared. THIS WAS THE COMMUNITY of 60 years ago. In our progress to move ahead we have left the core of the community behind. Do a little research and re-discover what made communities special, before we had food stamps, medicare, and social security. chalkdustlady
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STOP FOLLOWING AND LEAD
How can we adopt an internal insurance system in our own communities? Can we create our own system to step in when the government fails us? Can we get together and provide cheap affordable housing and help for our elderly or disabled? Why do we stop providing support when the government stops supporting us? yolanda
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SEE IT FIRSTHAND
A good friend always says that no matter how bad things seem to you, look down — there’s always someone who is in a tougher situation and who needs help. I’ve amplified that by suggesting that you try to take that insight and find a way to give a piece of yourself, whether it is your time, your talents, and/or your money to another who needs help. Giving opens your heart – active giving lets you see firsthand the change you are trying to achieve. penny
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INVESTING IN THE FUTURE
Hannah Silver, you’ve been beside me all day. Today (and tomorrow) are “Make a Difference Day” here in Holland because “Volunteer service is an investment in the future we all must share; and now therefore be it.” Watching children and young adults learn about the honor of volunteering and prepare their school projects is just one of the rewards in getting involved with Make a Difference Day wherever you are. amandel
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ASKING
What can we learn from this community’s caregiving event? It takes time to build on good ideas. Be patient. It behooves people to ask others to participate. Sometimes, people only need to be asked! Maggie
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INTERNET CONNECTION
Families have compensated for the stress and hurry of modern life with cellphone calls, e-mail and text messages and other new forms of communication. “There had been some fears that the Internet had been taking people away from each other,” said Barry Wellman, a sociology professor at the University of Toronto and one of the authors of the Pew report. “We found just the opposite.” Family Man
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GROUP HOME FOR DEEPWELL
The most common group home settings I’m familiar with are for children with developmental disabilities, and the elderly with dementia, alzheimer’s, etc. Group homes are typically designed for individuals with low cognitive functioning, who benefit from structure and supervision. Deepwell can benefit from a group home for those who need schedules and behavior plans. Sarina
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SMILE
I used to do volunteer work at Good Samaritan hospital, and I was part of the group of “Smile”. Which basically entailed us in going into patient’s rooms and checking up on them and seeing if they need anything to make their stay more comfortable. And of course smiling at them
Just smiling at someone makes a difference to people. Neela
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LITTLE THINGS
Many stories here are saying Ruby’s Will requires extravagant overhauls of ways of thinking and ways of acting. You can’t overlook that little things add up. anonymous
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AMAZING GIFT: EMPATHY
Just remember the simple word but powerful word — EMPATHY– and feel its meaning. Look down and care, don’t look up with envy. Open your heart. Put yourself in someone else’s shoes. Take some action. Help another. If Ruby’s Bequest helps the citizens of Deepwell learn these lessons that is indeed an amazing gift. penny
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SO LUCKY
I consider it an honor to be able to participate in my grandmother’s happiness and well-being on an everyday basis. Everyone should be so lucky. The feelings of purpose and love that comes from caring for your elders is crucial to the success of any community. jmswanson
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WHAT THEY CAN DO
People have a tendency to focus on what doesn’t work instead of what does. Making sure people with disabilities have opportunities to show others what they can do is very important for this reason. anonymous
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THINK HEALING
Deepwellians could meaningfully move closer to fulfilling the goal to improve healing of those needing care. Integral CG
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APPRECIATION
I’m privileged to be exposed to such emotional stories, and appreciate this online community of caregivers… I hope to connect with some of you with similar stories. ellenandtim
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NOT HOW MUCH, BUT WHAT
It is not how much but what you are doing with the resources you have… it takes a village to raise a family…. where did the village fail in the community… look there. Ruby Wood I hope we are on the same page. chalkdustlady
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THE NEW GREEN
What if caring was the new Green? klinds1
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