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I have to confess. I am a list-maker. My excuse is that I am a visual and kinetic learner. Seeing the words in front of me and the actual movement of writing help me to remember what I have to do, or buy or who to call.
It may not be polite to carry a list of the following communication tips, but you can review them and try a few at a time. They are even useful in everyday life, especially when meeting new people.
While care for your loved one can become tedious and emotionally draining, if you can find one aspect that is pleasant, you can exaggerate it. One of our clients says "Bottoms up!" when dressing his mother with Alzheimer's. It has become their private game, repeatedly enjoyed by each of them.
Keep a genuine smile on your face. Yes, people can detect a fake smile. One of the last things people with dementia lose is their ability to read faces and recognize feelings.
Bend or sit down to reach their level. Lower your head. Standing or hovering is intimidating and scary. No one can focus when they are afraid. Be conscious of your body language; keep it open, calm and even joyful.
Try to speak in a calm manner with a pleasant voice, even if you don’t feel that way. If you sound angry or agitated, people will often mirror that feeling back to you and then some. In any disagreement, catch yourself and stop arguing. You will be surprised at how effective this can be.
I am often trying to get all of my thoughts (and opinions!) out at once, while speaking. I am often "nicely urged" to slow down. I then breathe between sentences and give others a chance to hear and then respond to my words. This will make a great deal of difference when speaking to someone with dementia.
Have you noticed that when communicating with the men in your life; the simpler, the better? Studies have shown that women multi-task much better than men! Keep your conversations about one topic and use short sentences.
Why is a very hard concept to grasp. It involves much greater thought than simple statements inviting conversation such as, "That dinner was delicious. What did you like about it?"
They can't remember. If people bring up memories, you can expand on those. But asking a person with dementia to remember is embarrassing for them and may make them angry. It is embarrassing for everyone.
I am learning to use these tips in my daily conversations. I hope they are helping others to understand what I am truly saying.
Father’s Day changes dramatically once Dad is no longer independent, sometimes introducing questions of identity and authority as power is realigned. In early retirement, our fathers usually managed their own affairs and retained a psychologically important position of power in our lives – even if the life-long relationship has been more troubled than we might have hoped. But once Dad begins to depend upon us, the experience of honoring our fathers usually changes. Let us, then, take a moment to consider ways to celebrate this Father’s Day successfully, and perhaps to take a few lessons forward to the future.
If the relationship is good
The effort here is to find the right balance for your father’s current energy, health, and cognitive function. To make the day special, take the time to do more than the minimum (drop by for dinner and bring some cards), but do not over-tax him. Easy ways to make the day special might include
Even if your father has early or mild dementia, ceremonies like this can be meaningful. People with dementia often do not retain short-term memories, but their emotional states are quite real. Your dad will know he is loved and being accorded respect; just this can make his day.
If the relationship can be troublesome
This is a common occurrence. Remember to make today about him. Try to give him the day he wants – not the day you want him to have. Just for today, leave aside any issues that don’t affect his health and safety today. If he drives when he shouldn’t, then plan a special driver for the special event, but don’t remind him that you got the driver because he’s unsafe behind the wheel. Just say, “Dad, it’s a special day and we want to treat you like royalty.” If he can’t be relied upon to take meds, or has problems with incontinence, alter today’s schedule enough to have someone there (maybe not you) to be sure it’s addressed today, but don’t let him know. Having days when there is no tug-of-war will help.
If a spouse or an old friend is an effective buffer, take the time early in the week to arrange for that person to attend as well. If possible, speak to him or her and ask for support so that Dad has the best day he can, and you can survive with equanimity.
Perhaps it would help to sit before the event and write a letter and read it aloud when you visit. This gives you a chance to choose your words carefully and avoid references to hot button issues that can bedevil occasions like this. Keep the letter focused on what you can honestly be grateful for or can admire about him. Even if he failed to be as good a father as you would have wished, or you sense his disapproval for choices you have made, these matters can be left for another day (or not). For today, and for this letter, choose to focus your attention on respect and gratitude – and on love, if it is possible.
That said, if your father has a history of emotional abuse, it is not your job to sit through that until the day he dies. In those cases, find a way to pay your respects as appropriately as possible, but know your limits. If unhealthy behaviors start, give yourself permission to excuse yourself politely and respectfully, and leave. Only you know those limits.
This is a season of graduations and summer jobs, of vacation plans and other hurly-burly attendant to the lives of our sandwich generation. It is easy to swing by and skip taking much time to give our fathers time to express our gratitude for their parts in our lives, whatever that part may have been. But conscious gratitude is a habit worth cultivating, and with a bit of thought, you can make this a Father’s Day to remember.
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!
People familiar with Alzheimer's Disease and related dementias listened with interest last month as NPR reported recently (Alzheimer's 'Epidemic' Now A Deadlier Threat To Elderly) on the Alzheimer's Association release of statisitcs showing that Alzheimer's death rates are soaring, even as death rates from other diseases decline. The 68% increase in Alzheimer's deaths between 2000-2010 does mask some good news: other health factors like heart diseaes, which typically kill at earlier ages, are declining - leaving longer-living patients vulnerable to Alzheimer's as they age. Paradoxically, however, the only disease with a rising death rate and with no effective treatment and no cure or vaccine receives scant funding for research into solutions.
Because Alzheimer's rarely strikes until old age, many people mistakenly assume that it is simply an inevitable part of the aging process. Additionally, since its victims are almost always old while those of other diseases tend to be younger, there is a natural tendency to focus attention where it can add more years of life to the patient.
But using that "every dies of something" as a reason not to fund Alzheimer's research reflects ignorance of the problem. Healthy aging, and certainly a healthy brain, is possible until the end of life. Alzheimer's and dementia are slow and cause great burdens to sufferers and to their families. A decade or more of quality life experience is often lost by people ortherwise fairly healthy. Given the demographic trends and the number of people now at risk of developing dementia, the time has come for a dramatic increase in medical research for a cure or vaccine.
“You’re never too old to improve strength and stamina,” I find myself saying to yet another new home care client at our first meeting. This time, it’s a delightful woman who is no longer able to care for herself. It’s not due to a specific disease or injury. It’s a generalized weakness and a loss of mobility developed over time that keeps her now from doing her own personal care, housework, and errands.
She’s lost her independence to a large degree because of too little walking, stretching, lifting, and reaching. As it common, she’s also developed a terror of falling, which keeps her even frozen to the couch – a fear that becomes a self-fulfilling prophesy, as more muscle loss causes greater unsteadiness on her feet. Surely this is the harbinger of some future fall if it’s allowed to continue in this direction.
“Mom, I toooooold you to join the gym and work out! I do the elliptical a half hour each session, and it would do you a world of good, too,” enthusiastically inserts the adult daughter. “Work up a sweat every day! Take an aerobics class! You’ll love it!”
Mom looks at daughter with a jaded eye, no doubt recalling that recently she was too weak to rise from the toilet herself and was stuck there until a visitor arrived It’s clear that the two women’s realities are light years away each other in what becoming stronger means. As a result, the elder bristles and erects a stone wall of refusal. The daughter feels at her wit’s end. This, too, is all too common.
“I find that an aggressive family member can turn off an elder to more activity because they each have such different ideas of what that involves,” says Concord’s Diantha Millott, a certified personal trainer whose specialty is working with chronic disease, disabilities and geriatrics. “The message ‘you have to work long and hard or you won’t improve’ is just not true. Five minutes of walking inside the house at their own speed can be very effective. Gentle prodding and support are key.”
Families would do best to make that prodding coincide with something the elder feels is important. Our caregiver, Nick, who holds a degree in applied fitness, believes it’s at the very least a matter of respect to let people choose their own goals. “If their goal is ‘I want to be able to walk to the mailbox and back,’ then that’s where we focus. Often the children have ideas that are more about what they wish for their parents. I’ve never seen it be productive to tell an elder what to do.” He offers our clients concrete information about how more activity will benefit them, which helps motivate them to meet their own goals – but on their own terms.
A challenge to helping an elder gain strength is the myth that they’ll “bulk up and look like Arnold Schwarzenegger,” says Millott. “Women are particularly worried about this, but I assure them we are working to improve their balance and stamina, support their joints, reduce swelling in their legs and feet, and increase their blood circulation. This isn’t about trying to look like Arnold!”
A successful practice for increasing activity is to fit it into what gives them pleasure, points out Mary Ann, another of our caregivers. “Bring them to look at the birds at the window, go outside to see the plants growing. Acknowledge that for them activity may be difficult or tiring to do, but that it’s worth trying even for a short distance. And I make sure I don’t do things for them that they could do for themselves, to keep them active.”
Because we regularly find ways to encourage and support more activity with our homecare clients, including but not limited to formal “exercises”, many of us notice improved mental functioning linked to increased physical activity. This is for a variety of reasons, likely increased blood circulation being a primary cause. Also, activity stimulates the body to create “feel good” chemicals, helping to improve mood and reduce perceptions of pain, which further increases motivation and acceptance of activity.
Millott adds a few additional, concrete tips to help your loved one get and stay moving:
Focusing on the elder’s own goals, celebrating achievements, and enjoying camaraderie with regular practice, aging people can maintain or improve their independence and enjoyment of life, regardless of age.Editor's Note: This post originally appeared as Steps for getting more independent now in our column Living and Loving: Elder Care in the 21st Century in the Concord Journal.
People concerned about elder care and resources for senior citizens living in Concord should attend Saturday's Healthy Concord Community Forum at the Harvey Wheeler Center, 9:30am - 12:30pm. This is a chance to alter the resources and emphasis the Town places on issues of elders and elder care.
Back in the fall, the Town of Concord embarked on a healthy community planning project to assess the physical, mental, emotional, and spiritual health and overall well-being of the community. The project has worked to identify Concord’s existing assets and resources, define residents’ needs, and determine opportunities for improvement. The focus of the Healthy Communities effort has been on local issues that affect health and quality of life, such as:
I took a short break this afternoon, and when I tuned back into the world of news, I found that the expected winter storm Friday into Saturday was now being called a BLIZZARD WATCH! Eighteen to twenty-four inches are being forecast with high winds. My goodness...
We rolled into action to consider the safety of every shift change Friday and Saturday... will the roads the safe? Will it be snowing too heavily? How can we serve clients Saturday night and Sunday morning safely? We will work with families and caregivers to create a plan for any shift changes that may be made unsafe or impossible by this storm. We will be in touch wiht impacted families and caregivers.
In the meantime, this is the right moment to share two blog posts I wrote from a past winter storm/blizzard. They contain info about prepping clients' and the caregivers' homes, and other important information. Please review this and then get into action to get ready.
Who Will Shelter Your Elder Loved One in an Emergency?
First Possible Winter Storm Coming, Eastern Massachusetts
Easten Massachusetts Winter Storm Forecast Upgraded To a Blizzard
Readers and others often ask us how to start conversations with parents about planning for the parents’ potential care needs and other aspects related to their declining capabilities. As we approach the holiday season, this is an especially good time to have these conversations – key family members who may be available only during holidays are often present, and it may be easier, even given holiday activity, to find some time for a quiet conversation. In hopes of facilitating a successful discussion this holiday season, we offer a few thoughts about what needs to be discussed, and how to conduct a conversation with an elder family member to plan for a time when he or she may not be able to manage independently.
First, as you approach the conversation, you will typically find best success if you think of it as
a normal planning conversation. At all costs, avoid connotations that suggest this is a “now that the end is near” discussion. Not many people, especially those for whom the end may be approaching more quickly than they wish, want to reflect on their demise. Rather than present it in a way that makes Mom think that you are measuring her for the coffin, make it a normal planning activity that all responsible adults should conduct.
All of us should a medical proxy designated and power of attorney named to handle matters if we become incapacitated; everyone should have a current will and a record of where all the bank accounts are and the account numbers and relevant data. You might even mention that you recently reviewed your documents with your attorney to be sure they were up to date (if it’s a white lie but it makes the conversation easier, my advice is lower your standards and say it). Make up a “life event” excuse – we did it because the kids are older, someone left for college or graduated, you changed jobs, got divorced or remarried, moved to a new town, whatever. And having recently reviewed it yourself, it prompted you to ask about your elder – what would he or she want if there were a car accident or a sudden surgery and they needed help? Who should handle the money and who should make care decisions? What kind of care would they want?
Depending upon the personality of the elder, you may still get resistance. This is especially true if the person tends to use denial as a coping mechanism. But if you approach it as a hypothetical exercise (what if there were a car accident or a sudden surgery?), you may find more success. If the person is concerned that you are really maneuvering to take away the car keys, you will be met with suspicion and mistrust.
The trickiest part is often not the actual end of life – most people will concede it will come eventually, just not now – but the period prior to that, when they are healthy enough to live at home but not quite able to manage alone. In these cases, the elder typically is concerned, legitimately, about a loss of privacy, but also often needlessly concerned about a loss of autonomy. They may well fear that you want (or hope to) send someone who will tell them what they can and can’t do, and who will report on – “tattle” is how they are likely to see it – their activities.
The best way to avoid that kind of resistance is to present the care you think is needed, or may soon be needed, as an assistant. No one wants a baby-sitter, but most folks would like to have someone to handle daily tasks we don’t want to do ourselves. If it is clear to the elder that he or she remains in charge, and is giving the orders rather than being ordered around, resistance often declines. Let the assistant take care of the grocery shopping or the laundry, and Mom can relax. That has much more appeal than someone who is going to tell you that you are too old to drive any more.
As always, we strongly recommend that these conversations be started before they are needed. Once the person begins to decline, his or her resistance is likely to grow and any cognitive impairment can make the conversation difficult, or even or impossible. It may take several attempts so start early. And do not be afraid to ask for help from a counselor, clergy member, family friend, or a professional. These efforts will always pay dividends if the time comes that care is needed.
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.
Habilitation Therapy (HT) is considered by the Massachusetts Alzheimer’s Association to be the best caregiving practice that exists today. Learn about this comprehensive behavioral approach that will help both dementia patient and caregivers alike, which can help improve their quality of lives dramatically. HT helps difficult symptoms be reduced or eliminated, regardless of what stage of the illness the patient is current experiencing, by skillfully adapting to the capacities of the patient and communicating accordingly. Habilitation Therapy helps caregivers have positive and successful interactions with dementia patients, reducing stress, allowing greater enjoyment of each day.
There are still some seats available in this class. The 2-session training is structured to allow for learning of concepts, then practicing them, and then coming back to learn more concepts and trouble shoot difficulties encountered -- and to celebrate successes! Contact Concord Carlisle Adult & Community Ed to register. 978 318-1432.
FACULTY Deborah Bier, PhD, is certified by the Mass. Alzheimer’s Association and the Executive Office of Elder Affairs to train dementia caregivers and coach dementia families. She is the director of care for the metrowest Boston office of Caring Companion Home Care in Concord. She has trained professional and family caregivers across the US in these methods. Deborah holds a doctorate degree in therapeutic counseling.
A person with dementia can be said to be inhabiting a different world with a different reality than the rest of us. Habilitation Therapy (HT) tells us that they cannot leave there to be with us, no matter how much we may want them to. (Alzheimer’s Association, 2011) It is the job of care partners to be with that person by traveling to their world. This is done by understanding what they are experiencing, and respecting — never negating — their experience.
If, in the world of a person with Alzheimer’s Disease or a related dementia (ADRD), she is 8 years old (not 80), and waiting for Mother to pick her up after school to go home and milk the cows, then that is the world to which care partners must travel. It doesn’t matter a bit that Mother died 50 years ago because that is not true in the reality where the person with dementia is living... (see the rest of this article here)
While vigilance must be maintained and approaches honed as the disease progresses, simple but vital changes to the dementia patient’s environment can make a real difference in quality of life, safety and ability to function more independently. Applying our understanding of what isn’t working right in the visual cortex of the ADRD brain is central to creating the right interventions.
Here follow some concrete examples.... (see here for the rest of this article)
Habilitation Therapy (HT), a comprehensive behavioral approach to caring for people with Alzheimer’s Disease and related dementias (ADRD), is considered to be a best practice by the Alzheimer’s Association (Alzheimer’s Association, 2012). HT is best used for every interaction a person with ADRD has with their care partners, from the moment they rise until they fall asleep at night. One of Habilitation Therapy’s primary goals is to create day-long positive emotional states for dementia patients (Alzheimer’s Association). His or her capabilities, independence and morale are thoughtfully and continuously engaged to produce a state of psychological well-being.
Why such an enormous focus on emotions?.... (see the rest of this article here)
Seeing is believing, yes? In our day-to-day world, we believe that what we see around us is pretty much what others with healthy eyes can see. We see a clear glass filled with milk sitting on a white table, and we assume that others can see a clear glass filled with milk sitting on a white table, too.
But that’s not necessarily true if someone has Alzheimer’s Disease — they may only see the white table. Though it is not widely recognized, it is a fact that people with several types of dementia (but especially Alzheimer’s Disease) experience significant changes in the way their brains take in and interpret visual information, generally unconnected to eye health and function. These changes follow several predictable patterns that powerfully influence the behavior of people with dementia... (see the rest of this article here)
According to Silverman, Flaherty and Tobin (2006), …”[I]t is a better understanding of the psychology of dementia – how a person thinks, feels, communicates, compensates, and responds to change, to emotion, to love – which may bring some of the biggest breakthroughs in treatment….”
A parent, sibling or spouse has been just diagnosed with Alzheimer’s Disease or a related dementia (ADRD). In a somewhat perfect world, family members would receive an orientation to the disease, and learn how it affects their loved one’s behavior. They would quickly begin to learn how to deliver daily care and maintain best function. They would find out how to prevent many common, difficult behaviors, and address those that arise with some consistently applied, fairly easy-to-use psychosocial interventions.
The entire family and all other members of the care team in this somewhat perfect world would receive training and ongoing support to learn and apply Habilitation Therapy (HT), accepted as the best standard of care and psychosocial intervention by the Alzheimer’s Association (Massachusetts/New Hampshire Chapter), where it was first developed in the 1990s...(see here for the rest of this article)
Caring Companion Home Care of Concord, MA was selected by the industry's most prominent national trade organization, the National Private Duty Association (NPDA), to deliver a consumer seminar entitled "When Dementia Strikes: Managing Care and Making the Most of Each Day." It will be delivered as a free webinar on May 16 at 3:30 PM EST.
Alzheimer's Disease and Related Dementias (ADRD) cause grief for families and increasingly complex cases for home care agencies. The Alzheimer's Association and the Commonwealth of Massachusetts have developed an innovative new program to train family and caregivers in the use of Habilitation Therapy to reduce the care challenges in these difficult cases. Participants will learn about best practices in the industry as the country faces this growing challenge.
"We are truly honored to have been selected to deliver this information, among the roughly 17,000 thousand homecare agencies nationwide," says Caring Companion owner and long-time Concord resident, Jim Reynolds. "We owe this to our Concord office director, Dr. Deborah Bier, who has become a recognized expert on dementia and home care."
Reynolds and Bier write a monthly column for the Concord Journal and other Gatehouse Media publications entitled "Living and Loving: Elder Care in the 21st Century." Reynolds has established the agency as a leader in developing innovative technology and care solutions applied to elder care. They have been praised for their unique proprietary family communications platform, as well as its focus on wellness, and use of Habilitation Therapy to care for clients with Alzheimer's Disease and related dementias.
Bier, a 30-year Concord resident, was in the first group in Massachusetts to be certified by the Alzheimer's Association and the Commonwealth to train dementia caregivers and coach dementia families in Habilitation Therapy. She has a 25-year career as a counselor and agency director helping multi-generational families apply wellness approaches to managing chronic illness.
In most settings, caregivers know a lot about their clients'/patients’ illness(es), but what about their wellness? That is, the parts of them that remains well and functioning despite not having perfect physical or mental health. Our medical system emphasizes a focus on illness, with wellness a very much trailing concern -- if it makes it onto the radar at all!
At Caring Companion Connections, we very much focus on enhancing our clients’ wellness -- we don't just help them manage their problems! What all that means exactly will take some time and discussion between us over time as this blog unfolds. But I'd like to start with a wonderful example of enhanced wellness that happened between one of our caregivers and clients a few months ago.
Mary Ann had been working with a client who has been experiencing many different medical problems. After a couple of weeks of our care and some improved medical attention, the client's feeling a little bit better and more at ease. Rearranging things a bit, Mary Ann managed to get the client's musical instrument into a setting where it could be played. Despite having issues with one of her hands, the client played it for the first time in many months -- and was much more happy, relaxed and peaceful following.
Re-engaging with something a client loves creates increased wellness -- and makes her an active part of enhancing her quality of life. Sure, her medical problems persist, but a small, renewed zest for life made an appearance with those musical notes. Research shows that such enhancements can also decrease perceptions of pain, and a preoccupation with one's illnesses, losses, and limitations. Setting up the environment to allow her to play was key, and a great example of how we as caregivers can facilitate clients' wellness.
Here's another look at wellness, and a good example of how we all can adopt a wellness practice despite many illnesses or disabilities. Also the mysterious -- but clearly present -- relationship between giving selflessly, having a sense of purpose and increased health and wellbeing.
Research shows that people enhance their quality of life enormously by being altruistic; that is, giving with no expectation of receiving something in return. Note that a restored sense of purpose and demonstration that the person can still make a difference are key (fascinating article about it from CNN here). Also note that giving money is not discussed as part of this equation. (Unless it's enough to make a clear and lasting difference, I think money -- though important to give -- does not result in as much of this type of bang for the buck – pun intended.)
How does that apply to anyone who is a life-long caregiver? Certainly, caregivers are infected with that "helping bug". We know we feel good when extending kindness and care to others. Seeing the experimental proof of that is fascinating to me: increased abilities to heal wounds, and the release of "feel good" chemicals are shown to be clearly related to acts of altruism.
When I was supposed to have "quickly terminal" cancer (11 years ago this spring), I experienced this effect in doing full-time volunteer work in my community. The more I gave of my time and energies, the more I felt I received in return, even though I never anticipated that would be the case (no one but my husband and I knew my diagnosis was so serious). The stress of waiting out that year was in major part balance and enhanced by a powerful sense of purpose and effectiveness. And it's a prescription I have always given to my private therapy practice patients who had depression that just wouldn't budge: help others without expectation of anything in return... it will feel good and it will help with healing.
And how does this apply to our subject matter here of the elderly and the younger disabled? I tell our caregivers to suspect that many of our clients are not sure of how to channel their need for purpose and meaning given how much their health and abilities may have changed over time. I train them to help clients -- especially those who seem depressed, self-pitying and needy -- be more well (if not more healthy!) by reminding them of the ways they used to give to others, and how good it made them feel. Did they do some particular volunteer work in the past? Did they support certain causes -- and not just with money? Is there an organization or issue still near and dear to them?
I encourage caregivers to open a conversation about the client’s history with altruism. Let them tell you why this has been so important to them, and reflect back to them how important supporting a beloved cause is to you, too. Talk about this for a little while, and notice if there is a shift in short-term energy and mood -- even color in their face may improve. They may likely express regret not being able to engage any more.
But, oh, they still can! Caregivers just need to re-imagine with them how. It’s important to assure them that they are still needed and able to help, if only it can be figured out. Talk through with them about ways they can still give valuable aid -- quite apart from donating money. For example: reading about and raising awareness in friends and family around the importance of their favorite cause. Watch a TV show with them that touches on their altruistic interests; ask questions and discuss it with them. Remind them that spreading the word on a grassroots level is one of the most powerful ways to give.
I encourage non-profits to find concrete ways – beyond donation of funds -- to include roles specifically for older and disabled folks in their organizations’ activities. This is a powerful constituency who can both do good for noble causes, as well as for themselves by actively engaging at whatever level they can accommodate.
No, I'm not going all political here! I'm referring to the civilized tradition of people sitting down and taking tea with one another. Sometimes, we're so busy doing trying to squeeze in a little more housework, errand running, organizing, and on and on (and on!), that we forget the importance of taking a little sit-down with the elder we’re caring form.
I encourage our caregivers to establish a tradition with clients that a certain time is for sharing a cup together. They make it special for both of them: nice dishware, a little music. No agenda, no rush: just taking a spot of tea (or coffee, or whatever is preferred). Talking, listening, slowing down, unwinding, just being together.
In my opinion, some of this on a regular basis is much more important than any other aspects of caregiving – for everyone. Recall that caregivers don’t usually schedule in a little sit-down during our day. Teatime serves as a gift we give ourselves, too.
Many people get the urge to plant something come this time of year. To some of us it may not matter WHAT (flower, vegetable, herb, etc), as long as we're playing in the dirt and growing things. I had my first garden at 4 years old (taught by my grandfather), and it's blossomed (pun intended) to the point that this year we'll have nearly 4000 sq ft in agricultural use, mostly for raising food. I plan on gardening in whatever way possible until I'm ready to be planted!
It's very likely that some of our clients feel strongly this way, too. In my eyes, these feelings are a sign of underlying wellness and an innate instinct toward better health. Eminent biologist E.O. Wilson calls our natural longing for contact with other forms of natural life "biophilia;" it is an aspect of our wellbeing to be drawn to life this way. As caregivers, we can help nurture our elders' need to make this type of contact by helping them get their hands a little dirty.
Why is the urge to garden healthy? Obviously, gardening gives us varied physical activity: bending, lifting, reaching, walking, carrying, which can be health-building. But there are several more vital dimensions to gardening, some of which we can take advantage of even when an individual's mobility is limited.
There is a combination of physical, spiritual and emotional benefit that people derive from being with plants, some of which have not been well understood. But we do know that exposing people to plant life -- even if only by providing a window view -- confers benefits to their ability to heal themselves. For example, research has shown that hospital patients recovering from abdominal surgery given a view of plant life versus a brick wall heal faster with fewer complications, and required less pain medication. Allowing our clients a good view of trees, garden or lawn from a favorite chair would be a reason to give that window a good washing (we don't usually "do" windows!).
Mainstream medicine is finally becoming aware that the many types of "good bacteria" in our guts are absolutely vital to our immune health. Reflect for a moment that all of those species occur naturally in soil. While I don't suggest intentionally eating dirt a spoonful of dirt as therapy, I do suggest that some organically grown, raw food -- which would transfer soil bacteria to the GI tracts -- can be a particularly health-giving part of the diet. (Raw food is not, however, something to serve anyone with a severely compromised immune system; in such cases raw food may actually be prohibited by their physician.) A salad, for example, can be a place to start. If there is chewing difficulty, chop veggies small and mix with a little dressing. Letting raw vegetables marinate for an hour or more can also make them easier to chew.
Horticultural therapy is an expanding modality today, particularly in the area of mental health (see here for information about this field). Interestingly, a couple of years ago research showed an anti-depressant effect from soil bacteria, affirming the connection between improved mental health and gardening. (See here for more on this.) I know working the soil is one of my favorite ways to hang onto my last shreds of sanity!
Severe mobility limitations make certain gardening activities more difficult, if not impossible. But how about enjoying the benefits of gardening in more limited ways? What about a visit to a community garden or CSA? An arboretum? A healing garden (one in our area is the Virginia Thurston Healing Garden in Harvard)? Or a botanical garden? Many of these have handicapped accessibility. Even viewed from the seat of a car, newly plowed spring fields or a blooming orchard are uplifting sights. How about planting pots of flowers or herbs with the client? Tend them together? Keep them of manageable size. How about some easy, edible plants like colorful lettuces? Some easy and fast growing Chinese vegetables? Fragrant arugula, parsley, basil, thyme, or chives? Edible flowers like nasturtiums, pansies, or marigold? I can channel special seeds and seedlings to our interested clients...
Talking about gardening is a wonderful low-impact activity we can do. The colors, scents, textures and sounds of the garden may provoke the emergence and sharing of memories. As caregivers, we can attentively receive those remembrances, perhaps sharing back a few of our own. If you don't know anything about plants or gardening, you can allow yourself to be taught by a client who might be an old hand, who would love to pass along some of their experience and knowledge to you.
I'd love to hear your thoughts and experiences on this subject -- please add them in the comments section.
So often we hear from elders that food just doesn't taste as good as it did when they were younger. And it's fairly well accepted now that as we age, we lose some of our sense of taste of food. Food tastes less sharp and bright, and -- especially if we shun foods with excessive salt and sweeteners -- meals just don't taste like much. This helps to contribute to nutritional deficiencies as food becomes less and less interesting to consume.
But is diminished ability to taste really the entire cause of food losing its savor for many of our older population? Or is it that our customary food supply lacks flavor? I think it's probably some of both.
Think about it: those who are now in their 70s and older grew up in a time before industrial farming and food manufacturing. Typically, they ate food grown closer to their own communities. A far greater variety of breeds of chickens, cattle, pigs and sheep were given pasture regularly, and were fed entirely differently than they are today. Older varieties of plants and animals were used, much of it what we now call "heirloom" stock. These are particularly delicious -- and often too fragile to ship long distance.
Today we see a more narrow variety of plant and animal foods for sale. The same (to me) amazingly dull tasting varieties are found around the country, bred and grown for uniformity, toughness during shipping, and long keeping abilities -- not for great flavor. Fish is largely farmed, and tastes nothing like wild, fresh caught. How many of the dozens and dozens of varieties of, say, lettuce, beans, cabbage, or chickens do most people even know exist, much less ever see for sale?
As a backyard farmer growing well over 100 varieties of plant foods in my suburban yard, I can attest to the fact that food found in our supermarkets (and even in many speciality stores) -- and also, as grown from the typical seeds found in most garden centers -- contain just a fraction of the flavor of what I now grow and eat. Even though I used to be a professional chef, until I raised this many heirloom plants, I had absolutely no idea of the amazing depth and variety of flavors that had never met my palate.
Why does this matter? Besides sheer pleasure, the more flavor food has, the higher is its the nutritive value -- particularly in plants. The naturally occurring compounds that we experience as taste, fragrance and color in grains, legumes fruits and vegetables are the same ones that provide dense nutrition. If food doesn't taste like much, it can't provide much in the way of nourishment. Older folks may well remember what food is "supposed to" taste like -- can we blame them for finding our more modern fare too pale by far?
Farmstands, CSA's (Community Support Agriculture) and backyard gardens may be key to turning this around for many of us. And not just for plant foods -- many more folks are raising amazingly tasty eggs, dairy and meat. So why not take an excursion to a local farm with your favorite senior, and begin a paired journey to better tasting and healthier food? Open a discussion about the foods your family's elders remember eating when they were young. Where did it come from? How did it get to their home? How was it different from what they have eaten in their later years? How the same?
Buy, trade or beg eggs laid by the chickens kept down the road, and together compare their appearance and flavor with supermarket eggs. Plant and nurture a pot of heirloom salad greens together. How does it compare with store-bought? Discuss what previous food traditions might be possible to re-establish in the household. Such conversations and experiences will both educate the current household shopper, as well as spur the sharing of fascinating memories and traditions.
As a culture, we have lost so many of what anthropologists call our "foodways" -- the rich cultural traditions connected to geographic locations, ethnicity, and to the seasons. Foodways are often also connected to fabulous tasting heirloom plant and animal varieties that have been handed down through the centuries, some virtually unaltered from ancient times. These are also traditions that connect family members to one another, and to their ancestors through time. Until enough of these are re-established -- or wonderful new foodways are created -- how would we know just exactly how much of a loss of food taste is due to aging, and how much is due to the lack of flavor of what we eat?
Following on our earlier post here about getting our clients and caregivers out into the garden, and how health promoting working and being with plants is, I thought I'd talk a little about therapeutic or healing gardens. These are fairly new types of landscape design concepts and practices, though in many ways gardens for healing, restoration, respite, and sanctuary have always been present since the time humans first started nurturing plants.
There are a number of different types of therapeutic or healing gardens, some with general healing intents, and others with more specific purposes. There are healing gardens designed specifically for Alzheimer, cancer, psychiatric or rehab center patients. Other gardens focus on assisted living facilities, residential memory units, adult day care or continuing care communities, or vocational schools. And yet others are intended for respite or meditation.
The individual design elements of these gardens will reflect whatever their specific focus might be. But looking at some of the universal elements we can find ways to bring these concepts into both elders' and caregivers lives. In her masters' thesis, Landscape Architect Annalisa Gartman Vapaa consulted many sources and came up with a list of the defining characteristics of healing gardens. They are:
Vapaa reminds us that "[f]rom this list certain ideas may be appropriate, however, not all may be necessary in order to achieve a healing design. This list is in no way complete, nor is it absolutely necessary to follow unconditionally but rather it is a basis for beginning the design process." Nonetheless, I think we can start to fold some ideas into even the simplest home use. Here are a few concrete applications.
1. Make the plan and plant choices a collaborative effort. Both elders and their family members often feel a loss of control in their lives. Re-establish some where possible, and choosing plants and how they will be arranged is one area where control can be exercised. I encourage our caregivers to have our clients take over or at least participate in making these choices.
2. Involve as many senses as possible. Use colors (a narrow range, soft, or bright colors elicit different responses), tastes (use only edible plants if there might be confusion over what is/isn't edible), textures (for example, smooth leaves versus fuzzy; touchable plants), scents (both flowers and scented leaves can directly stimulate memory and emotion), sounds (wind chimes or a small fountain, for example), contrasting colors (can help dementia patients better understand what they are seeing), and unconfusing light/shadow (ditto, for dementia patients).
3. Consider access. Containers raised up on a picnic table or wide railing on a deck make plants accessible when there are mobility problems. Raised beds can also be helpful. Water is heavy: have a source of water nearby, such as a spigot or hose.
4. Enjoy the creatures that come. Plant it and they will come! Yes, it's tough to love a woodchuck that's just eaten your plantings to the ground. But you can plant flowers that specifically attract butterflies, hummingbirds and other pollinators; here's a webpage to help: http://gardening.about.com/od/attractingwildlife/Attracting_Wildlife_into_your_Garden.htm.
5. Create calm, sanctuary and respite. Religiously keep work out of that space; for example, don't bring in the taxes to be done or bills to be paid. Add a seat with a view of the best of the yard or deck, not chores yet to be done. Give yourself permission to not look beyond the beauty of the setting you've created.
I'd love to hear what works for you... what aspects of healing gardens have you been able to incorporate into your life? What simple measures have given you big results? Please add your experiences in the comments.
We publish a periodic newsletter (available via snailmail and/or email) with articles about the work we do, aging in place technology, enhancing your or your loved ones' care at home, helping caregivers, hands-on caregiving, and all the other topics we talk about more extensively on this blog. Download the current copy in Acrobat (PDF) format here, or click on the image at right.
Hats off, and many thanks, to Toby Conway of Minuteman Senior Services in Burlington, MA, for an excellent discussion on elder abuse and neglect last night. We had previously encountered Toby through her work as a case manager with one of our clients and her passion for this work always shines through, as it did last night.
As one would expect, Toby recapped the signs of physical or emotional abuse (unexplained bruises, withdrawal, implausible stories, etc) and the resources (contact CCC or Minuteman for questions). But I thought one of the most interesting points to emerge during the discussion the importance of caregivers being able to recognize when they are becoming overwhelmed, and their own need for care.
I'm reminded of airplane safety messages, when they always instruct passengers to put on your own oxygen mask first, before helping other passengers. You won't be any good to anybody if you are passed out on the floor! Some of the same is true for family caregiving: we see that much of the abuse or neglect stems from the family caregiver feeling overstressed. Most of us do not plan to spend great amounts of time caring for parents and few of us have built schedules with those needs in mind. Trying to be sure dad is okay while keeping a full schedule at work, with kids, and in the community can be overwhelming.
Toby provided a list of red flags for caregivers. Many of these indicators and feelings appear in every caregiver at one time or another, but if you feel this way often, or if you feel recognize yourself in several of the items in the list below, we recommend that you get some help. Talk to other family members and make some changes in the care plan. Minuteman Services can help. Caring Companion Connections can help. Start by calling one of us. There are many resources available to help you through this period and to make this phase of life as positive as it can be.
Red Flags for Caregivers
Call for help if you see or feel the following:
Nearly everyone recognizes these feelings some of the time. None of this means you are bad, or violent, or neglectful. In fact, they just mean your human and your are under a lot of stress! But none of us is Superman or Superwoman, and if you feel this way often, it is time to make some adjustments. Talk with others in your family to see if they can share the responsibilities. But if they cannot, seek some support. Call your local Council on Aging, or Minuteman Senior Services. And of course, if you need help for a loved one around the home call Caring Companion Connections.
Remember that aging is a natural process and is a phase of life - not a disease. It is our goal, and can be your goal, to make this phase of life to be as satisfying as possible. You and your family deserve it!
Remember the health-benefits-of-altruism topic from a past CCC blog post? It's here: http://blog.caringcompanion.net/2010/03/02/the-power-of-altruism-and-wellness/ This is an update from the field!
One of our clients feels very connected to feral cat causes; our wonderful caregiver, Elizabeth, thought to make some simple catnip toys to benefit needy kitties, toys they could make together. The client is truly excited and energized by this -- she is doing something concrete to help a cause very important to her. She need not feel stymied by any part of the construction process that requires eyesight or manual dexterity she might not have -- the caregiver will help with those parts. This is the very stuff that helps make us all feel alive, isn't it? So much more so for someone who may no longer be clear about what they can contribute due to disability or failing health.
Just think of all the great discussion and bonding that will go on as they work together on this over the next weeks! I've got to think this is a stress-reliever for the caregiver, too. Historically, women have always shared time this way -- that is, up to and mostly excluding our own era. And there are all types of health benefits, too! Here are two really interesting articles on the health benefits of repetitive needlework like knitting and crocheting: "Knitting for Better Health" and "Knitting And Crochet Offer Long-term Health Benefits" (you knew I couldn't resist including some research to back up this concept, right? Of course not! We have to use both our hearts and our heads to make our work the best it can be!) Between fulfilling a sense of purpose, and the handi-work that helps both the body and mind, this is simply an inspired project!
A few weeks back, I posted an article called "Can We Help Elders Recapture Their Taste for Food?" This article from the Utne Reader -- Remembrance of Foods Past -- discusses this topic from a slightly different, but articulate, view.
"Thriving in old age isn’t simply a matter of nutrition—it’s a matter of taste," says Darra Goldstein, the editor of Gastronomica, an exquisite quarterly journal of food-focused scholarship, fiction, and poetry.
...Last spring my mother had to enter long-term care. She is someone who always cared passionately about food... Even in her diminished state she discerns what tastes good and what does not, and she responds accordingly. This experience is shared by many people who find themselves in institutional care at the end of their lives. Yet hardly anyone is speaking about better food for the elderly. Their eating habits are not a public health issue, like type 2 diabetes or childhood obesity. But providing pleasure through food is not frivolous; what and how we eat are crucial to the quality of our lives....
As we move through life's challenges, it's important to give encouragement and affirmation to both ourselves and others. A popular method is to use affirmations, positive statements to help create positive outcomes. For example, upon rising in the morning, "I will have a great day today."
I've always been a bit standoffish about the use of positive affirmations. For some reason, they have always seemed to me like convincing myself or others of something, rather than working towards the desired outcome. While I'm all over having an optimistic point of view every day, reciting affirmations just doesn't somehow cut it for me... nor has it for many of my patients/clients. The whole thing is often accompanied by a lot of "if you're not talking positive all the time, you're messing up your life," kind of trash talk... hardly positive, but that's part of the baggage the practice of positive affirmations all too often drags along.
It turns out recent research shows that using affirmative statements to help create positive outcomes is not as effective as we might hope. There is a better way to create the results we'd like, and that is to form the desired outcome into a question. Using the same example as above, "Will I have a great day today?" would be a way to use this technique.
One experiment involved subjects solving anagram puzzles, the "non-affirmation (framed as a question) out-performed the traditional affirmation... by over 85%." Pretty impressive!
I can think of many ways to explore how to apply questions instead of affirmation to the subject of aging, home care, and caregiver needs. We can coach those we care for around the most effective way to ask questions to create improved outcomes. "Will I be able to take my favorite walk today without tiring?" "Will I get a restful sleep tonight?" "Will I be able to climb the stairs safely?" I think it would be important to encourage asking such questions in a state of open curiosity, not fearfulness.
For caregivers, the same method pertains to their needs. "Will I be able to balance caring for myself and my loved one/client?" "Will I gracefully talk to Mom about some changes we need to make, and not lose my patience?" "Will I make some time for myself today?"
For more information on the research, see the blog post in Exploring the Mind: Brain Candy for the Curious Mind by Mitch Lovich here: http://exploringthemind.com/the-truth-about-affirmations/
21 Concord Road, Sudbury, MA (map here.)
Tuesday, June 29, 2010 -- 7-9 PM
Get the facts from Stuart Hamilton, an Elder Law Attorney (www.StuartHamiltonLaw.com), Linda Smith, a Certified Professional Geriatric Care Manager and Independent Registered Nurse (www.mweldercare.com), and Deborah Bier, PhD, director of a local home care agency (www.CaringCompanion.Net).
They will educate and answer questions about the many legal, safety, activity, housing, caregiver support and care options available as people age.
A recent article in the New York Times caught my eye -- Aftercare Tips for Patients Checking Out of the Hospital. The Times cites among other statistics that 20% of Medicare patients return to the hospital within 30 days of being discharged. That astonishingly high percentage drives millions of dollars in unnecessary medical expense, and greatly reduces the quality of life for patients who might have stayed healthy at home.
At CCC, our goal is to drive that number close to zero within our client population. We do it in two ways: a focus on wellness and using cutting edge technology to help confirm compliance with plans of treatment.
Focusing on wellness helps to get clients as active and engaged as possible in their lives; this improves moods, appetite, and activity levels. Playing an instrument, gardening, re-establishing communication with old friends, manageable home improvement project ... there is a wide variety of activity that can help clients, depending upon their overall health and status.
The Times articles points out that "Many patients, especially older ones, leave the hospital with a host of issues to manage. ... But there is a movement to improve care after discharge and to reduce readmissions." At Caring Companion, our on-site caregivers post daily updates to a private, secure web portal that can be remotely viewed by family, health care professionals, or case managers. This allows instant remote access to confirm that plans of treatment are followed or to check the status of health measures that may call for increased early intervention to reduce the likelihood of a hospital readmission. This keeps the client comfortable at home, reduces hospital stays, and lowers overall health costs.
As older age lasts longer, we believe that new approaches like this will be keys to delivering elder care in the 21st Century.
Many wellness practices and activities are designed to increase positive affect (among other results), and as such we feel our wellness focus here at CCC is therefore crucial to our clients' and caregivers' health on all levels. While some folks think that wellness is just a "nice extra", studies such as the one below show how absolutely vital wellness is for creating, improving and maintaining our health.
"Optimistic Expectancies and Cell-Mediated Immunity: The Role of Positive Affect," published by the Association for Psychological Science, is just the latest article showing the connection between attitude and health. In short: increases in positive cellular immune factors were shown to correlate directly with increased levels of optimism.
While typical care focuses almost solely on what's "wrong" with you, (that is, your diagnosed illnesses, losses in function, disabilities, etc), this -- for me and most other people -- doesn't do a thing to increase a sense of positive emotion. In fact, the spreading medicalization of our lives produces the complete opposite of wellness: we become less and less able to remember that we are NOT just a collection of broken parts, but whole people capable of rich, complex, and satisfying lives. (Are you surprised to find out that the professor who impacted me most as an undergraduate, medical sociologist Irv Zola, helped coin "medicalization" as a now widely-accepted term?) Yet, every one of us has become medicalized as is typical of our culture. It is vital to counteract its depressing -- and health robbing -- effects.
For more about this how Caring Companion Connections employs wellness practices in our clients' homes, go here on this blog for a collection of articles on this subject: http://blog.caringcompanion.net/category/wellness/