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In one busy week, I am being interviewed on TV and in a newspaper for two aspects of my life which now overlap; working for a home care agency and leading a drum circle. (See Part 3 of "Almost Famous" to see how they overlap.)
Tuesday, I spoke on a panel at University College in Saco, ME. I found myself saying…”If you are lucky, there comes a point in your life, for me it was about 50, where the things you love to do all come together.”
Publicity for three different events I am involved in is starting this week.
1) Friday morning, I will be on a TV show talking about dementia Memory Cafes.
2) Friday night, a journalist will be attending a drum circle, which I started, to write about the drum circles I lead in local elder care facilities, here in Maine.
3) In March, CCHC will be hosting and presenting at a dementia seminar entitled: Dementia: Mapping the Journey.
I met Ken Capron, the founder of Memory Works, Monday, while attending my first Memory Café, in Kennebunk. In that small group, there was such concern for the family caregivers...wonderful.
I recognize a kindred spirit in Ken. He has great vision revolving around educating local people about dementia, and providing a social outlet for them and their caregivers. He is not only knowledgeable, but kind and funny! When pressed, Ken listed his many careers: accountant, real estate agent, owner of a toy store, and fraud investigator. There were more that I can't remember.
His concept, now a reality, is that each cafe is located in or near a coffee shop, so the meetings become a "meeting for coffee" social and support group. After stopping at Elements, my favorite chai place in Biddeford, to confirm, I now find myself leader of a Memory Cafe there! (2nd Thursdays of the month, 11am)
Other cafes are more clinical, in that workers provide medical information and guidance.
Tomorrow, Ken and I will be taped for a local TV program on Channel 3, Biddeford, ME, to be repeated during the week. There are 180 Memory Cafes in the US and 10 in ME. Ken hopes to have 40 up and running by the end of this year. Here is Memory Work’s definition of the cafes:
"Memory Cafés are places where persons with Alzheimer's or a related dementia can go with their care partners to just socialize and have fun with other people going through similar things. A Memory Café has no real agenda or stated purpose except to enjoy each other's company. Sometimes the group may decide that it wants to have speakers or an educational component, or do special activities like go to museums or music recitals. Each memory café around the country is different; all are grass roots efforts to assist the person with dementia and their care partner to have a good day. The first cafe opened in the Netherlands in 1997. Dr. Miesen later helped the UK start their cafes in 2000. The first Alzheimer's Cafe in the US started in 2008 in Santa Fe, NM."
Stay tuned for: Part 2 - The Interview and Part 3 - Drumming
At a recent Hospice Conference in Portland, ME, Dr. Ira Byock told us about his unusual request for a Father's Day Gift.
He received the heath care directives of his two daughters. I couldn't help but think that if a gerontologist is doing that in his family, we all should be.
Yes, I still consider doctors to be authorities, on some subjects, while doing my homework on the internet before my visits. As a doctor, how does he urge patients to complete directives?
At the time of their first visit, a health care directive form is included in the patient's paperwork to be completed. "We do this for all of our patients", he explains to them. It's a matter-of-fact statement and it tends to work.
Here are some definitions of advance directives for you:
A living will (health care declaration or health care directive) lists the treatments and life-sustaining measures you want and don't want. Included are: Mechanical Ventilation, nutrition or hydration administering, dialysis, and organ donation. Contact a local medical school if you would like to donate your body.
A health care Power of Attorney is a document that designates an individual to make medical decisions for you in case you're unable to do so.
A DNR is a request to not have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. You can add a DNR to your file at your doctor's office. We recommend that you keep one at home, on top of the refridgerator, where it can be easily accessed.
I recommend ordering "Five Wishes" from http://www.agingwithdignity.org/five-wishes.php, published by Aging with Dignity. It can also be completed online. Not only does it ask similar questions (as above) but it includes such topics as "Do you want a memorial service?" "How would you like to be remembered?" I am liking mine, very much.
Don't wait until the next holiday that you celebrate. Add "Order this form" to your to-do list. Doing this will be a comfort to your family and a gift to yourself.
I spent half of Jaws under my seat and have not watched horror movies since. This seems like one. I can't see, my feet hurt and there is constant noise. This is just like that party last week.
The four of us from Caring Companion Home Care are starting a "virtual dementia tour" at Atria in Kennebunk,. ME.The form asks: Do you feel confused, anxious, disoriented? I don't know what is going to happen. Maybe anxious.
We each put plastic soles with spikes face up in our shoes. Next are yellow goggles and big gloves. Lastly, ear buds playing constant noise- I keep trying to hear what the people are saying but it is a jangle of ...well, noise. Susan leads me into an apartment, promising not to leave me and asks me to do four tasks. I immediately forget number four.
1- Find and put on the white sweater. I head for the bedroom, walking slowly and hunched over because I can't see my feet. My co-worker (at least I THINK it is Maggie) is folding clothes on the white bedspread. That wasn't on my list - or was it? The sweater is not there but here it is in the white closet.
2- Write three sentences in a letter to your family and put it in the envelope. Is the paper in the bedroom? No. Kitchen, no. Score! Living room. I can't see if my pen is writing and jeesh, I can't feel the paper to rip off the pad. These people are mean and I now hate envelopes.
3- Set the table for four. They didn't get me this time. Only 2 mats are out. But, dang. Paper plates. How many are here? Plates and mugs, not so bad. I can't feel the weight of the plasticware.
I hear Maggie asking questions. "She won't answer you!" I yell. I can hardly hear myself. Can she hear me? She is counting out her tasks and says "water". That's it! My fourth thing. I feel around for the clear plastic cup.
Yay, I win. What do I win? Awareness of fear, frustration, disorientation and wanting help, feet that still tingle and thankfulness that I do not have dementia.
Susan gives us therapy...er...talks to us about the experience. We talk about color contrast and keeping items where they belong. It's hard for dementia patients to see white on white which is why it's a good idea to use colored plates so they can see their food. It's good to greet someone from the front, waving hello, saying their name aloud and extending your hand. I can see that these steps will help to orient someone.
An hour later, we have put the episode behind us. Because we can. I am so glad I can.
Will the weather outside be frightful? Read the following to help prepare yourself and your family for this winter’s “big one”.
Each June in Florida, hurricane preparation begins. Personal “Hurricane Boxes” are stocked and insurance policies checked. When Home Depot runs out of plywood (to cover windows), stores run out of bottled water and more than a #1 level hurricane is approaching, reality hits.
After being without electricity for several days, I have learned the following lessons- the hard way:
I am in the tail end of the baby boomer generation and the elder care industry is preparing for the Silver Tsunami we will create. I suspect that you, as well as I, have pretty much not prepared ourselves for the health care and end-of-life care we will need.
As my father's disease progresses, I find that what I am learning for my work for Caring Companion Health Care is extremely helpful for my own family. Hospice started working with my father and mother about 18 months ago. Our hospice social worker provided answers to every question I could come up with and gave us emotional support. They are a wonderful, caring, and knowledgeable group of health professionals.
I was lucky enough to attend the recent hospice conference in Bangor, ME. Women I had not met talked to me in the buffet line, at my table and in the halls. That conference room was full of kind people, working in health care. The woman seated next to me, quietly left the room during the key note speech and returned with a muffin. When I whispered "Where did you get that?" she offered it to me. I glanced down at her nametag, already guessing; yes, she was a hospice social worker.
The first thing Dr. Ira Byock, (palliative care expert, author of three books, a Dartmouth professor, and a frequent TV and radio guest), said was: "I have some bad news that I hate to tell you, but...we all are going to die". After about two seconds of shocked silence, the laughter erupted. Of course we are all going to die, but how often do we talk about it?
Did you know that hospice is available starting 6 months before death? Right now, 1/3 of the patients use it only for 7days or less. Hospice actually provides many kinds of care, including pain management, while not hastening or postponing death, just making it easier. Dr. Byock pointed out that the end-of-life has many aspects. Relationships can be resolved. Families can talk about the meaning of life.
The most important thing I learned that day was actually the basis of his book, The Four Things That Matter Most About Living.
When your loved one is dying and you don't know what to say, say these four things:1- Please forgive me2- I forgive you3- Thank you4- I love you
As Dr. Byock says, "You will never be sorry that you did."
We are about to enter the "Holiday Trifecta" period, with Thanksgiving and New Year's sandwiching Hanukkah and Christmas. Whether we rush to enjoy the bacchanalia of celebration, or slow down for a period of reflection, all of us who play a role in managing care for an aging family member know the stresses of holiday travel and celebration. We strive to include the elder as much as possible, to avoid taxing him or her too much, to meet the care needs, and (we hope!) to build yet another loving holiday memory for family members of all ages.
Celebrating year-end holidays can be even more taxing if travel is involved. Here are a few tips to make holiday celebrations as positive as possible for everyone:
We sincerely appreciate our caregivers and we thank them often. The work they do, their devotion and our work have brought tenderness into my life. I often tell my coworkers that my job has changed me. I am not making that up, anticipating my next raise!
Back in the dark ages, I found socializing to be awkward, embarrassment-inducing and
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.
25 years ago, walking to an Ocean City, NJ beach with my three-year-old daughter, I sang at each street corner. "Stop, look and listen, before you cross the street. Use your eyes, use your ears, and then you use your feet!"
Approaching a person with dementia is significantly different than greeting a friend or family member. It is important for you to know that their brain is changing. They are confused or anxious. They may not remember you, that you were coming, or why you are there. To ensure that your appearance does not startle a person with dementia or put them "on edge", try the following, which is very similar to that little song:
This coming Friday, the Liberty Alzheimer's Partnership will host a fun evening of music to raise money and awareness for the Alzheimer's Association. Music of the 40s, 50s, and 60s will provided by the Golden Tones, a chorus of senior citizens based at the Wayland Council on Aging, and by the Vocal Revolution (formerly Sounds of Concord), an award-winning barbershop chorus. Singing along and dancing are not allowed - they are required! It is an early evening (5:30pm-8pm), to allow families to bring members of all ages, from youngsters to those who may be suffering from dementia. Light supper will be provided. Location is First Parish in Concord, 20 Lexington Road. It will be fun and inspiring, and for a good cause. We hope you will join us!
“She’s running me ragged!” A client said that to me recently, speaking not of her small child but rather of her aging mother. A dutiful daughter, she finds herself sometimes overwhelmed with the tasks of caring for an aging parent. It is a common conundrum: how do we care for aging parents while maintaining sanity in our own full lives?
One important criterion when you care for an elder is how long the current condition will last. If someone had a hip replacement, your role is time-bounded and the strategy is to be sure you have enough resources to weather a short-term crunch. But sometimes the caregiving lasts for years, as with chronic conditions like COPD or with Parkinson’s Disease. In these cases, learning to manage your own stress is as important as being sure that Mom gets to the next medical appointment. A good maxim is to remember the admonition before each airline flight: put on your own oxygen mask first – you are no good to anyone if you pass out. Remember you are in a marathon, not a sprint.
Care for aging relatives can be expensive, however your family chooses to cover it. Whether it is an assisted living facility, home care, or living with family, many financial and personal trade-offs are required – often over a period of many years. As we discuss this with families, the value of long-term care insurance (LTC) becomes clear. Long term policies can be purchased at any point, but as you would expect, cost and rates of declined service increase dramatically with age. If you are still in your fifties, you should seriously consider purchasing it. This is not, however, a commercial for new purchasers; we will focus this post on what you need to know if a loved one already has the policy, how to understand what it covers, and how to calculate its benefits.
Summertime vacations always bring an increase in calls from concerned adult children with some flavor of this question: “During vacation, we noticed Dad is slowing down. We think he might need help at home, but we aren’t sure. How can we tell?” The decision is not always clear -- keep reading for tips we have developed working with many families.
We are proud to announce that we are opening service in Maine, and plan to begin serving New Hampshire by the end of the month. Karen Banning of Biddeford, who previously has served as Client Care Coordinator in Massachusetts for two years, has been appointed Director. The Seacoast office is located in Saco. Our unique communications system, with online daily reports, photos, and status checks, continues serve as the hub of a system that provides better communications, better service, and better quality of life. That is our vision and the basis of our success. Caring Companion's Alzheimer's and dementia services are based on an approach called Habilitation Therapy, developed by the Alzheimer's Association of Massachusetts and New Hampshire. Habilitation Therapy encourages safe, positive reinforcement of the patient's current state in preference to trying to reorient the patient to current facts on the ground, which often leads to unnecessary stress between caregiver and patient.
The Seacoast office will offer in-home care on both an hourly and live-in schedule. Many services are available and may include personal care, transportation, meal preparation and homemaking. We look forward to extending our service area and the families we can help in the process. Thanks to all our clients and friends for your ongoing support.
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.
Teepa Snow is a dynamic, inspiring, insightful coach for professionals and families who support Alzheimer's patients. She will appear in Newton on Wed May 29, 2013, to give a FREE seminar, entitled Essentials for Your Journey Together. This is a rare chance to see such a gifted speaker on Alzheimer's Disease. At Caring Companion Home Care, we use videos of some of Teepa's training when we train our own caregivers to work with Alzheimer's patients. She is funny and empathetic, and her West Virginia accent stays in Massachusetts ears long after the video ends. If Alzheimer's is an issue in your life, take the chance to see Teepa.
Essentials for Your Journey Together with Teepa Snow Wednesday May 29, 2013 5:30PM - 8:30PM Lasell Village at Lasell Collegede Witt Hall in the Winslow Academic Center 80 Maple Street Auburndale, MA 02466
Concord residents had a terrific opportunity to learn from one of the nation's leading Alzheimer's researchers last night as Dr Robert Stern, co-director of the Center for the Study of Traumatic Encephalopathy at Boston University's School of Medicine, spoke at the Concord Council on Aging. Stern, an excellent speaker, filled evening with both useful information and hopeful stories. I knew we were in for a good evening when he started off with what most would consider a professional and political No-No: he told a joke about a man suffering from Alzheimer's Disease. And his point was well-taken: successful Alzheimer's caregivers have to have a sense of humor.
This past week the Boston Marathon bombings put parts of the city and suburbs on lockdown, providing an unwelcome example of a type of emergency families rarely plan for: terrorism and police actions. Most people who care for elders think often about the elder’s own health crises, and all of us have to plan for blizzards, power outages, and related events. But reassuing a frightened elder during an act of terrorism? Not so much.
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!
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