Comfort Keepers offers a great new resource for caregivers of the past. Comfort Keepers shines light on three caregivers that deserve particular attention for stand out experience. These three women have shaped and molded the term “caregiving” into what it is today and Assisted Living Today wanted to shine light on their top notch work as well. You can view the full series on the Comfort Keepers website but below is a synopsis of what Comfort Keepers had to say.
Elizabeth “Aunt” Branwell is one of these behind-the-scenes-heroes. Aunt Branwell cared for the Bronte Family who were famous for their gothic romances, Jane Eyre and Wuthering Heights. Though their famed stories are far reaching, many don’t know that Aunt Branwell stood behind them as a faithful and selfless caregiver. During an age when lives were short, sickness and disease ran rampant, and the term ‘caregiver’ wasn’t yet a formally recognized term, women like Aunt Branwell played an integral role in the upkeep of the Bronte household and their place in society.
Caring for seven people is a daunting task in itself. However, in June of 1825 Aunt Branwell was put to the test after a string of tragedies hit the Bronte family. The oldest children died of tuberculosis that they contracted at school and their father removed the other children from school. Aunt Branwell was held responsible for their education from then on. Without her assistance, it’s unlikely that their father alone would have been able care for his children during those years. Further, without Aunt Branwell’s guidance and educational support, Emily, Anne and Charlotte may not have become the prolific writers we know today.
Dolley was a trendsetter, she was the first presidential spouse to renovate the White House and was known for hosting large events. Likewise, her exploits during wartime earned her the name “Mother of the Nation.” Collectively, these actions helped reconstruct the role and responsibilities for First Ladies to come.
After her influential years in the White House, Dolley and James took charge of the beautiful Madison plantation home in Virginia. James’ mother, Nelly Conway Madison, lived on one side of the plantation home. Dolley and her mother-in-law were very close and as Nelly aged, Dolley became her sole caregiver. At one point, Nelly turned to Dolley and said, “You are my Mother now, and take care of me in my old age.” Dolley devoted her life to caring for Nelly until she passed away at age 98.
No one has done more to recognize and address the struggle of the caregiver than Rosalynn Carter. Known for her purpose driven life, Rosalynn Carter, wife of former President Jimmy Carter, is often referred to as a “powerful champion of caregivers.” Rosalynn has spent more than four decades improving quality of life for people around the world. Today, she is a leading advocate for mental health, caregiving, early childhood immunization, human rights and conflict resolution.
Julia Soto Lebentritt is a ‘lullabologist’ and the owner of Spontaneous Care Communications. She has spent her career recording, presenting and producing lullabies from the many cultures that make up our American society is commended for clarification of the lullaby as a genre and exploration of multicultural settings. As an elder care case manager, bereavement facilitator, therapeutic activities director and a family member, she is a caregiver using lullaby traditions. She has certification in Alzheimer’s disease management and a master’s in fine arts in creative writing.
Interviewer: Julia, it’s nice to talk to you today. We’ll talk about your book for caregivers, It’s called “As Long as You Sing, I’ll Dance: The Bond, not the Burden, the Blessing of Reciprocal Caregiving.” You draw on both professional and personal experience to write it. Can you give me a little background on that experience?
Julia Soto: OK. The book is strongly motivated by my mother’s dementia that was a really traumatic experience for me and my family. I’ve always been involved with care giving in many different ways. I’m called a professional caregiver, meaning that I’ve worked in caregiving for the last 15 years or more, especially as an activities director at a CCRC and a case manager for the aging in a field position.
I was out in the field in northern Vermont. I’m also working now in bereavement at a community hospice. I have…I’ve worked in other positions that have been direct care, like nurse companion, and various ways that have been useful [inaudible 01:33] , but the major other part of this unique piece of my work is that it’s related to parenting, as well.
Interviewer: You talk about reciprocal care giving. Is this a term that you’ve coined, or you’ve just developed? Can you tell me a little bit about what it means?
Julia: I have…It’s my own method that I experienced. In the ’80s I had the opportunity through grants from several national, state, and local programs to develop a rather large project called, “The New York City Lullabies Project.” And in that I went out and recorded on‑site the actual soothing and relaxing of children. And I saw there that the partner, the adult partner, could not soothe or relax the child without soothing and relaxing themselves. So I saw the reciprocal care that is available in good attached…as good attachments and bonding in the parent child/relationship, so that means it’s a mutual thing. That there’s no way that you can quiet down another without quieting yourself first and soothing yourself.
So out of that came my experience of I went into healthcare facilities and worked. I saw that there was a stressed care going on. The caregivers were stressed. It was a stressful place, and that if they could come for heart‑to‑heart care.
And even on your website I noticed today that there’s a mention of a quote. A happy senior says, “What we noticed immediately was that the employees treated the residents as friends and in some cases family.” And so what comes naturally really is, for the human being, caring and kindness, but if not nurtured and maybe also helped along by being encouraged that we should be interested in present in the moment, that caregiving is not reciprocal. In other words you’re not caring for yourself at the same time as you are caring for another when you are not giving reciprocal care.
Interviewer: OK. So tell me then about the lullabies, and how they have a place in care giving through reciprocal care giving.
Julia: Yes. First of all, I want to make it clear that I’m not talking about the recorded lullaby with music. I am talking about music. I’m talking more about the ways that the kinds of communications that the lullabies encourage. So in my book I’ve actually done an interesting piece of work in breaking out what lullaby communications are like, so the book includes activities that relate to humming, rocking, swaying, singing names, traditions of gathering. That’s like storytelling, other ways that we can gather through traditions that we create, tapping, echoing gentle touch. So I’m talking about the communications that the lullabies encourage, as well as the singing of certain songs that are appropriate and are meaningful to the people we’re working with.
Interviewer: You say in your book that people with Alzheimer’s or dementia remember feelings associated with places and people even if they don’t directly remember the place or the person. So would you say that your therapies are ways to elicit memories of those feelings? Or to create a safe and familiar platform?
Julia: Yes, absolutely. One of the major points in the book is making is that it’s a myth that there’s nothing there at all. Memories are sensual, related to sensual experiences, and the problem is is that we have to accept that we can no longer communicate just with language as if it were in an office somewhere or that the caregiving can be tremendously creative like our parents were creative in caregiving, that we can actually find a way that brings us back to our more original language, which there were many options when we were growing up as children to use sound, touch, movement, and all of these will help bring back memories and physical activity as well. And that is profound. There have been many examples lately, especially on the Internet, the viral example of that elder that was having no response at all in a wheelchair, and then suddenly they played some jazz from his youth on some iPod, and he became totally electric and shared memories of seeing Cab Calloway, or someone like that. It’s amazing.
Interviewer: It is. That’s really neat. Do you think just because we begin to rely so much on verbal communication that we forget these things?
Julia: Definitely, yes, we very…and that’s what’s stressing our society or culture today. We were not really built for the speed that we’re moving at and the daily census that has to be kept at such a large number and the requirements of documentation. We were not really built for that, and we’re involved as caregivers and as human communication. Also I want to point out, Carrie, that the history here is important to look at because dementia was originally treated under psychiatric nursing, and geriatric nursing is a fairly new and emerging field. So, for instance, my Aunt Sadie ended up in a mental institution because she was senile, they said. And that wasn’t that long ago, that that was how we took care of people who begin to exhibit dementia, and couldn’t be left alone, you know?
Interviewer: So your book is really useful for caregivers across the spectrum, whether you’re caregiving in your home or for people working in a facility.
Julia: Yes, thank you. I just want to point out that I had an experience in a wonderful CCRC in Vermont, northern Vermont. Wake Robin is the name of it, and there we had a group of independent, and some assisted living people, who joined the St. Bernard’s. And they become caregivers of these skilled living facility residents. And they were companions using the kinds of activities that I’m proposing in my book. I recently was visiting and doing a program at a facility in Albany, at the Region House, and one of the elders went off happily with the book, because she said, “We can do this. We can do this. We can help other people. I know this song.” So I think the caregiver, the people who are in your facilities can caregive.
Interviewer: Great. OK. Again, the book is called “As Long as You Sing, I’ll Dance: The Bonds, Not the Burden, The Blessing of Reciprocal Caregiving.” I can find that on Amazon.com. Is that right?
Julie: Yes, that’s true.
Interviewer: OK. Thank you so much for your time today. I really appreciate talking to you.
Julie: OK. Thank you Carrie, and let me know what
Transcription by CastingWords
This spotlight will focus on The Gardens at Westlake, an assisted living community located in Westlake, Ohio, an affluent suburb of Cleveland. The facility is near major roadways including Interstate Highways 80, 90 and 480, which makes it ideal for those with family throughout Cuyahoga, Lorain, Medina, and Summit counties. This also makes for easy access to the St. John West Shore Hospital and downtown shopping district nearby.
Situated on an 11-acre beautifully landscaped campus complete with wooded areas, courtyards and gardens for the residents’ enjoyment, this facility is just one of the communities owned by Spectrum Retirement Communities, LLC. Spectrum is known as a leader in providing affordable luxury assisted living locations in desirable cities throughout the United States.
When considering a move to The Gardens at Westlake, you can choose from a variety of floor plans that include spacious studios or one to two bedroom apartments depending upon your needs. All come with fully equipped kitchens and large walk-in closets. You do not need to worry about an expensive buy-in as The Gardens at Westlake offers an affordable month-to-month lease for its residents. They are so sure that new residents will be satisfied with their move to their community that they offer a 60-day money back guarantee.
With life at The Gardens at Westlake, you can feel at home and do not need to worry about leaving your cherished pet behind, as pets are welcomed in this community both as residents and visitors. The staff recognizes the bond between people and their pets and believes their residents should not have to give up this source of comfort when moving to this community.
Living at The Gardens at Westlake is similar to living at a luxury hotel minus the expense expected with doing so. With Spectrum’s signature “At Your Service” program, you or your loved one will experience hospitality at its best. Similar to what one would find in a fine hotel, The Gardens offers concierge service that you will not find in other facilities. Imagine being spoiled with conveniences such as these that are part of living at this facility:
On-site salon, spa, and massage services
Dry cleaning and laundry service
Sports, theatre, and concert ticket purchases
Personal exercise trainer
Living at The Gardens at Westlake affords residents the opportunity to maintain their independence as much as they are able and enhance the quality of their lives with the amenities that are included. You are not just a resident, but also a member of a community where you can expect to be treated with dignity and respect.
The caring and attentive staff at The Gardens at Westlake plays a large part in making this facility stand out from other assisted living communities. It is their goal to exceed their residents’ expectations when it comes to meeting their individual needs and providing them with a great amount of options when it comes to choosing how they wish to be involved in activities. The exceptional efforts of the staff has not gone unnoticed given the wonderful testimonials given by residents and family members who have been touched by their care and understanding.
This is also true of the facility’s Executive Director, Christina Melaragno, who was recognized a 2011 award for Outstanding Executive Director from the Ohio Assisted Living Association for her efforts at The Gardens of Westlake. This award is given to those in the assisted living care industry who are recognized by their fellow colleagues or the residents of their communities for their commitment in providing exceptional service. Given as one of the reasons for her nomination was her belief “that she and her staff are privileged to do what they do and her goal to make life better for those lives she touches along the way.”
For those seeking an assisted living community in the Cleveland metropolitan area, The Gardens of Westlake is an excellent choice. See what a difference a caring staff and Spectrum Retirement Communities’ signature programs can make in your or your loved one’s life. Call and schedule a tour of this facility and you will agree; The Gardens of Westlake feels like home!
This spotlight will focus on the Arbor Grove Assisted Living community located in Alma, Michigan. This facility is one of several homes owned and operated throughout the state of Michigan by the Leisure Living Management Corporation. Located on a beautifully landscaped property in the heart of Michigan, this this area maintains its rural charm while continuing to grow as a center for business and industry. Arbor Grove is nearby to many shopping opportunities that include national chain stores and specialty shops located in Alma’s downtown historic district. The town also owns ten parks throughout the town for those who enjoy being in the great outdoors.
Arbor Grove offers multiple options for senior living at their facility. These include independent living for those who are able to live independently and options for those who require an assisted living situation to assist them with their needs. Apartments vary in size with such configurations as companion suites, one-bedroom, or studio apartments that include kitchenettes and full private bathrooms. All come with an emergency call system and individual controls for heating and air conditioning. You need not worry if you have a small dog or cat as pets as Arbor Grove is a pet-friendly facility.
What sets Arbor Grove apart from other facilities is their commitment toward “providing high quality senior lifestyle services that promote the value and dignity of every person.” As a member of Leisure Living Management Corporation family of homes, this facility strives to provide the elderly with a full range of services that will adapt to their ever-changing physical and mental needs. Therefore, as you or your loved one requires more assistance, the facility will be able to tailor their living situation so that they are properly cared for in their golden years.
Specialized services are available for those who have medical needs that require additional care. The trained staff at Arbor Grove is available 24 hours a day and can provide insulin administration for those with diabetes and offer care for those who suffer from neurological illnesses. Respite care through Arbor Grove allows for short stays to recover from illnesses or to provide temporary relief for caregivers. Day care is available for those seniors who require assistance or the opportunity for socialization but return to their own or their family’s home in the evening.
Arbor Grove offers dining services to all its residents in its spacious and beautiful dining area. Mealtime is a special time to enjoy socializing with other residents. The meals are geared toward the residents’ individual dietary needs and have a regional flair, in addition to being wholesome and nutritious.
Life enrichment activities, including outings and events are regularly scheduled to enrich the lives of the residents of Arbor Grove by allowing them opportunities to socialize and remain active. Some of the activities offered are bingo, exercise classes, movie nights, and guest musicians providing musical entertainment for the guests’ enjoyment. Residents may also visit the onsite beauty salon for hair and nail services each Thursday. Special events for holidays, birthdays, anniversaries, and other milestones in the residents’ lives are regularly celebrated. Friends and family are always welcome to attend and take part in these activities with the residents.
When you are looking for a senior living facility that fits your individual needs whether you or your loved one is an independent senior or requires assisted living services, Arbor Grove Assisted Living is one facility to consider in the Alma, MI area. Schedule a visit to see for yourself the difference that this facility can make in your life.
Denise began working with family caregivers in 1990 and started her own business to help them in 1994. She sent out the first issue of her monthly print publication, Caregiving!, in January 1995. She discontinued the print publication in 2005 to concentrate solely on online content.
She regularly speaks about the family caregiver experience; you can view her list of seminar/workshop topics here. Her insights have been featured in The Wall Street Journal, SmartMoney.com, Time magazine and Chicago Tribune. Denise is also a professional caregiving coach, working with family caregivers and professionals to find the meaning in their journeys.
Denise Brown: Hi, this is Denise. Can I help you?
Carrie: Hi, Denise. This is Carrie. How are you?
Denise: I’m good. How are you?
Carrie: Very good. Is this still a good time for you to talk?
Denise: It is.
Carrie: All right, let’s jump right in then. We’re going to talk today about caregiving.com’s happiness problem, or project, excuse me. Let me start that over again. [laughter]
Denise: Carrie, can I ask you real quick, can you hear me OK? I’ve got my headset on with my cell phone. Does it sound OK?
Carrie: Yes, I can hear you well.
Denise: OK, great.
Carrie: Yeah, you’re very clear. Thanks. Today, we’re going to talk about caregiving.com’s happiness project and how it has helped caregivers cope. First, Denise, can I ask you to introduce yourself and describe briefly how caregiving.com came to be?
Denise: Sure. My name is Denise Brown. I launched caregiving.com in 1996. It was really a solution to what’s common in a care‑giving situation, which is isolation and loneliness. The purpose of the site is to connect family caregivers to give them a place where they can talk about what’s really going on, to provide them an opportunity to support others who are in a similar situation and to feel like there are solutions, like they can make it through, like there is hope for them.
Caregiving.com is really a community. What ties the community are care‑giving experiences.
Carrie: Wonderful. Specifically about the happiness project, what is it and why did you decide to start the project on caregiving.com?
Denise: The happiness project is basically a way to help family caregivers find moments of happiness during a time that feels so dark and unhappy. The inspiration was a book by Gretchen Rubin, where she talks about basically her own happiness project. In the book, she takes us through her journey to figure out how could she be happier? The reason she starts this journey is her husband has a diagnosis of a chronic illness that’s currently in remission, but she knows down the road that she’s going to have some help needs, that he’s going to need her help, her care. Well, she decides to figure out what makes her happy so that she has that when that will happen.
I thought, what happens after that point? Can you add more happiness during a time that’s so difficult? If you haven’t really thought about what makes you happy, can you take time out during a difficult time to figure that out?
We started the happiness project in July of 2010. Each month to those who are part of the project, I send out an email with an action word. Then I give them suggestions of how they can implement this action word in their day.
Then they commit to an action based on the word and then, hopefully, make improvements, month to month, that become part their life. What they change one month, they carry into the next month and then they get a new action word. What they change in the second month, they add to what they changed in the first month.
We’re really looking at changing the day so that what makes you happy is part of the day.
Carrie: Right. The action word is the same as the behavior. It’s the whole heart of the idea. What has been your favorite word or, maybe, participants who have gone along with you through this project, what has been one of the favorite action words? Can you describe the actions that came from it?
Denise: My favorite action word was “replace.” It was the second month into the project, second or third month into the project. I decided I was going to replace plastic bags with canvas bags. Anytime I went into a store, I was going to bring my own canvas bags with me. It was something I’d been meaning to do for 10 years, which I never did until replace was our action word.
Carrie: The word does not always have to relate in some way to care giving, then?
Denise: It does not. It can or it also could be something that they just decide they want to do in their life anyway. That’s what’s great about it. It’s completely flexible. They can look at, “This is something in care giving that isn’t working for me, so I’m going to replace it with something else.” Or they could just decide they’re going to replace a food choice with a better food choice. I give that child ideas to think about and then they determine what it is that they’re going to do.
When I replaced these plastic bags with canvas ones, you would think it wasn’t necessarily all that much happiness, just that. I was so happy when I go shopping that I do this. I’ve tweaked my habit so I have canvas bags in the back of my car or the truck. It just makes a difference for me.
Instead of holding on to that thought, oh my gosh, I’ve been meaning to use canvas bags for 10 years and I still I’m not using canvas bags, I thought, isn’t it great to do what I meant to do all these years?
Carrie: One thing I think is important to note, too, is that this is giving caregivers permission to say, “I’m not always happy.”
Denise: Oh, yes. Right, yes.
Carrie: Is that an important thing to be able to do?
Denise: Absolutely. The care giving is sometimes what holds them back from admitting that this is really an unhappy time, because they feel guilty. Thinking what will my “care‑ee,” the person who is receiving my care, my family member or friend, think about the fact that they have this chronic illness or disability and because I help them, I’m now unhappy? It’s a hard fact to admit. Yet, it’s just a fact of care giving.
There are so many things that happen in the experience that could really leave you feeling, “Oh, I just don’t want to have to keep feeling this.” The sacrifices that you make, you watch someone in continual decline. It’s a sad time. It’s a sad time, so it leads you to unhappiness. It’s just sometimes hard to admit that.
Carrie: It’s important to make a decision to be happy, I suppose. The plan was to run this project for a year, and yet, you’re on the second year of the project. Is that correct?
Denise: We’re on the third year.
Carrie: The third year.
Denise: We just started the third year in July of 2012.
Carrie: Right. Why did you decide to continue? Do you see this now as an indefinite part of the website?
Denise: I asked the participants what they thought as we were nearing the end of the first year, if they wanted to continue. They all said yes, absolutely, so we just kept going. It is now something that is just a part of the site. It’s free to join. I do ask anyone who wants to join to take a really quick survey. Basically, the quick survey is just a measurement of their happiness, how they view their happiness.
At the end of the project, whenever the project ends for the participant ‑‑ because it could end, there’s no assurance of the end ‑‑ I like them to take a survey at the end that says, “How did this project, being a part of this every month, impact your happiness? Did it make a difference to do something like this?” I added something like a little research component to it.
Carrie: Yeah, you’re able to gauge how it’s helping people. Really, caregiving.com is a resource for a broad community of caregivers, allowing them to find support and develop true and lasting friendships. How important is human connection for caregivers?
Denise: Oh, my, gosh. Oh, that’s so great that you’ve picked up on that. It’s really critical because you can find yourself in care giving spending time with someone who is unable to connect with you in that relationship any longer. They might have a cognitive impairment. They might have so many disabilities and such tremendous decline. It’s difficult for them to connect with that family caregiver, so it’s a very lonely and isolating experience.
Then, from the family caregiver’s perspective, there are often others who don’t understand what they’re doing. Family members, friends might not be there in a way that the family caregiver thought they would or wanted them to, so there’s a lot of loss in relationships in the care‑giving experience.
When they go to a website like caregiving.com, they can connect with others who understand, who don’t ask that question, “Why are you doing this?” Everyone in the community understands why someone is doing what they do. They understand care giving, so they don’t ask those questions.
They just support. They understand. They acknowledge. They say, “Oh, I’ve felt that way, too.” They share solutions. More importantly, I think what the community does, each individual, each member is just moving forward, just a little gentle nudge that says, “You’re empowered and you can keep going. We believe in you. We know you can do this.”
Carrie: Right. It is caregiving.com. Like you said, it is free to join. Correct?
Denise: It is free to join. When you join, you can join an online support group. You can start a blog. If you like, you can create a group for your own family members and friends. You can share a calendar, schedules, appointments, who’s doing what, when, you can keep your family and friends appraised through your own personal group. If you’re interested in more intense support, we do have membership programs. There’s a program called Chart Your Path. There are monthly programs where we really focus on what you do well, emotionally and physically?
Carrie: All right, Denise, thank you so much for your time today and your dedication to a resource that helps people make connections.
Denise: Thank you so much. This was great.
To learn more about caregiving.com or to contact Denise, please visit her page here.
Transcription by CastingWords
Interviewer: So we can go ahead and get onto talking, today, about advanced planning and making some smart financial and planning decisions as people enter late adulthood. Sheri, I wonder if you could briefly introduce yourself and tell us a little about where your expertise lies.
Sheri: Certainly, my name is Sheri Samotin and I am the founder of LifeBridge Solutions, which is a business focused on helping older adults and the people who love them, mostly their adult children, deal with the business of life. Our expertise is in the area of life transition coaching, helping people plan for their futures of where and how they want to age and be cared for and how they’re going to pay for that, as well as daily money management. Which is all of the day to day, managing the mail, paying the bills, dealing with Medicare and insurances and all of the paper monster.
Then finally, I serve as a professional fiduciary and a registered professional guardian.
Interviewer: OK. Let’s talk specifically about fiduciary services. Can you describe what they are and why it’s so important to think about guardianship and power of attorney and those things as people age/
Sheri: Certainly, fiduciary services in a nutshell are all of the roles that are played when you cannot handle things for yourself. You may not be able to handle things for yourself temporarily. For example, let’s say you’ve had an illness or an injury and you have to have surgery and you’re hospitalized. That may be just a temporary thing or you may be traveling or in the military. So there are lots of reasons why you may need a fiduciary even when you’re well and younger and all of that.
But generally, it’s when people become incapacitated either physically or, more often, cognitively, and can no longer handle their own affairs. Or once you’ve passed away. So there’s a couple of different kinds of fiduciary, the first is a durable power of attorney. This is someone who steps into your shows as your agent for financial and business matters.
The second is your healthcare surrogate, or in some states, called your healthcare proxy or healthcare power of attorney. This is the person that you name who can make healthcare decisions on your behalf if you can’t.
Next is, if you have a trust, so if part of your estate plan is that you’ve established a trust, you generally will be the trustee while you’re alive and able to do so. But then you have to name a successor trustee and that successor trustee, then, is a type of fiduciary.
Then there’s a personal representative or executor of your estate. So once you pass away, in your will, you name someone. Again, this depends on the state whether it’s called an executor or a personal representative, they’re interchangeable. But that’s the person who has to settle your estate and is responsible, legally, for wrapping up your affairs.
Those are the types of fiduciaries you can name while you are living and have capacity.
If you don’t do that, so if you don’t name anyone or you name people who can’t serve or who pass away before you or won’t serve or whatever ‑‑ in other words, if you enter a situation where you either haven’t named anyone or you’ve named people who can’t or won’t serve, then you require a guardian. In some states that’s called a conservator.
If it’s dealing with your assets, it’s a conservator and if it’s your person, it’s a guardian. In other states it’s called a guardian of the person or guardian of the property. Again, it’s very similar and that is a court‑appointed position where you can name something called a pre‑need guardian.
So you could say, “If all else fails, here’s who I’d want to be my guardian.” But most often guardians come into play for people who haven’t planned ahead and named those other things that I just mentioned.
Interviewer: So you actually are a registered guardian within the State of Florida.
Interviewer: So you would step in at the time that somebody else would not be available. You would be, then, named by the state, is that true?
Sheri: It’s actually named by the court and that’s the court in our circuit, in our county. So it’s a local thing where I’m, what’s called “court appointed” as the guardian.
Interviewer: At that point, maybe, steps have not been taken by a person. There’s not been a lot of preplanning, which is maybe why we circle back around to why it is so important to think about these things before you reach that point.
Sheri: Right. In my view it’s critically important to do so, because you get to be the decision maker. For example, when you do plan ahead and you select whether it’s family members as your fiduciary or somebody who’s a professional fiduciary, such as myself, or what’s called a corporate fiduciary, which may be a bank trust company, in any of those cases, when you plan ahead and you name those people in your estate planning documents, you actually get to talk to those people, whoever it is you’ve named. What I do with my clients is I prepare my clients because put together something called a life transition plan where we gather all of their important information in one place, not only the things you’d expect like their account numbers and their passwords and things like that, but also things like if they have a pet. Who takes care of the pet if they can’t? What happens to the pet if they’re no longer here to care for the pet?
So we get into details well beyond simply the factual thing with the accounts, which would be obvious. But when you plan ahead you have the opportunity to do that and to pull all that together. Even more importantly, to have the important, but often very difficult, conversations about where and how you want to live and where and how you want to die.
Because the people you’re appointing as your fiduciary very well may be those who will be making, in the end, those decisions on your behalf. The more we can use what is called “The Doctrine of Substituted Judgment,” which means I’m stepping into your shoes and doing what you would have done in the situation, that’s always better than the doctrine of best interests, which is me trying to say what I think is in your best interest.
Interviewer: Right. What is it that you think keeps people from planning ahead and how can people overcome that?
Sheri: Most people don’t plan ahead because of denial. We all like to think we’re going to live forever. Especially, the younger we are, the less we want to think about any of this. But honestly, the people who really must do the most planning are the people who don’t think anything’s going to happen to them. So younger people with young kids, it’s very sad when those people don’t plan and then there’s a tragedy, a car accident, or something like that, and they’ve done no planning. Because then the courts get involved and the last thing you want is courts making decisions about your kids.
Sheri: So everybody should plan. But I think the main reason people don’t is denial and fear and procrastination. We’d all rather be out doing whatever it is we like to do. It’s an arduous process. It’s not an especially pleasant conversation to contemplate ones own demise. But it’s a certainty and that’s what I tell clients. Really, the position I take is it’s the very best gift you can give your family.
Interviewer: So for a family just exploring these issues, do you have any other advice or guidance about either handling affairs on their own or seeking professional services?
Sheri: The most important thing is to do it. I care less about how it’s done than that you do it. So what are the things you need to do? Number one, you need to consult with an attorney who specializes in end of life matters. So somebody who is a specialist in wills, estates, trusts and so on, and have the proper documents prepared which conform to the statutes in the state in which you live. A huge mistake I see people make is either not doing documents at all or going online to one of the many services or going to the office supply store and buying forms and thinking that their situation is simple and therefore that’s all they need and, well, they’ll save a few bucks by doing it themselves.
I’ve seen that and it’s a huge mistake, because people’s situations are very often not as simple as they think they are. So that’s what the first thing is, consult with an attorney who knows what they’re doing, pay the money, and have your documents done properly.
Then, keep them up to date. If there’s a major change in your life or in the statute in the state or if you move to a different state, you need to have those documents reviewed and potentially updated.
The second thing you can do is do what I call the life transition planner, but another way to think about it is an owner’s manual for your life, and pull everything together into one place. If you can do it yourself, that’s awesome, most people can’t. Most people start with good intentions and get about a sixth of a way through it and it goes in the drawer.
But, do it yourself, do it with a buddy, do it with a professional. I don’t care, just do it.
Interviewer: That’s great advice. Thank you. Sheri, thank you so much for your time today, for sharing some really good information with assisted living today, listeners and readers. I really appreciate your time.
Carol Bradley Bursack has devoted much of her professional career to educating caregivers, both professional and non, on the importance of caring for their loved ones and themselves. She is a regular contributor to various industry leading blogs including HealthCentral/Alzheimer’s, and the forum moderator and a regular contributor to AgingCare.com. She is also the author of “Minding Our Elders:Caregivers Share their Personal Stories” and runs MindingOurElders.com a portable care giving support organization.
Erin: All right. Can you give me a basic description of what you do?
Carol Bradley Bursack: Yes. I’m an author, columnist, blogger. I’m a forum moderator and anything else. I support caregivers, pretty much. My aim is to support caregivers along their journey, based on what I’ve been through. Also, I’m very strong on preserving the dignity of elders. My background is a family caregiver, as you’ve seen, of multiple elders, so most caregivers can relate to me. I can generally tell them how to sell their experience in one of my seven elders to what they’re going through. Anyway, that…
Erin: [inaudible 00:54] .
Erin: I said, you definitely can, yes.
Carol: Yes. Anyway, what I do is really offer support from the depth of my experience. Plus, all the years I’ve done…I’ve learned so much from other caregivers. It all has built over the last decade to the point that…It’s a matter of give and take, but I do draw on my background a great deal. I just want people to know they’re not alone. That’s the whole point of my website, my book, everything else I do. They are not alone in this. When I first started, there was almost no support, and it was extremely isolating. I know now how isolating people can be now, even though there is a lot of support, so I try and help them along.
Erin: What should a loved one do if they suspect their elderly loved one may have memory loss?
Carol: I would take the person to a physician who understands that memory loss may not be due to dementia. There are other causes. That’s one of the reasons for so many misdiagnoses. UTIs, medication problems, and other health problems can have people acting like they’ve got dementia when they don’t. They can mimic dementia‑like behavior. Once those causes have been ruled out, then I make sure that they are given a battery of tests by some doctor, a specialist, probably, who understands the different types of dementia. Alzheimer’s can become a catch‑all, these days. Sometimes it’s important to decide what kind of dementia they’re dealing with once they’ve ruled out all other causes.
Erin: How would somebody find out which doctors are familiar with dementia and Alzheimer’s?
Carol: Generally, they’re neurologists. If they are able to get into a gerontologist for a beginning, that is wonderful. We don’t have enough gerontologists to handle all our elders. That is really the place to start, if they can get in to see a gerontologist. From there, a good gerontologist will direct the people to other doctors if they don’t feel that they have the expertise to make that diagnosis. If they can’t get into a gerontologist, and they see, say, their family doctor, they can test for a UTI or something of that nature, but probably, people should go and see a neurologist. Maybe check ahead, see if they deal with Alzheimer’s.
Word of mouth is still great, but doctors, just like it is everything else. If they have friends who have had a diagnosis or been to doctors because of memory issues, certainly I would advise the families or the people themselves to look around and ask, too.
Erin: What did you learn on caring for your six elderly family members and your elderly neighbor?
Carol: It’s hard to put in a nutshell. I learned a great deal from them. I learned compassion. Not that I was not a compassionate person to begin with, I guess, or I wouldn’t have done it. I really, really learned compassion for their losses. The losses that occur during the aging process I often compare to a rose losing petals. It can be gradual, but it can also in the end be devastating. Compassion is number one. Also, respect and dignity are due to elders no matter what they have wrong with them. Elders are not our children. They are adults with a legacy, and they should be treated as such.
Also, each elder is different. Even if you have two people that have the same disease, they may show different symptoms or behave differently, so it’s important to treat them uniquely.
Erin: What made you write “Minding Our Elders”?
Carol: I wrote my book while I was deep into…Well, there were five of my elders remaining. My whole life revolved around elder care, child rearing, and going to doctors. I did feel quite alone. I felt other people did. I began my book as a therapy and a catharsis. My dad had had brain surgery that was to correct the ill effects of a World War II brain injury. What happened was it threw him into dementia overnight. That was really the catalyst. He’s on the cover of my book. I had to work through the pain of seeing my adored dad turned into a different man by a failed surgery. From that book grew the website, blog, and all the other things I’ve done in the eldercare field.
Erin: I’m sorry there about your dad.
Carol: It was horrendous. I just answered a question…
Erin: It sounds like it.
Carol: I’m writing a column now. I wrote an answer to a woman for my next column. The same thing happened to her from surgery. She said people just don’t understand what can happen with elders in surgery. She had the same thing. It’s devastating. The medical people generally don’t want to acknowledge what happened because they’re afraid of lawsuits.
Erin: Yes, exactly.
Carol: So anyway, yes, it’s horrible. But that was my catalyst in that. Yes, it is on the cover of my book, and a great deal of what I write about when it comes to dementia, his was not Alzheimer’s, obviously, but I learned a great deal at a time when not too much was known.
Erin: Can you tell me what “Minding Our Elders” is about?
Carol: Well, the book Minding Our Elders, the subtitle is Caregivers Share Their Personal Stories, and it provides insight into family caregiving through short interviews with 20 caregivers, and it has my seven experiences with my seven elders. I set it up so that people can find the story that most reflects their own experiences, and I’ve been told by many people they keep it for bedside reading, because what they do is, they’ll go through these very short little encapsulated stories and say, wow, that’s me. And that’s one that will help keep their heads above water, because they relate to that one caregiver who is going through a similar circumstance. So, what it’s about, it’s there to support people, and it’s real stories about real people in their own words.
Erin: When is it time to move an elderly loved one to assisted living? How do you know it’s time?
Carol: From the elder’s standpoint, I believe it’s when they are no longer safe living on their own, or they become so isolated that their lack of socialization is affecting them mentally and physically, and they can then start showing dementia symptoms simply because they’re so isolated. The other reason would be from the caregiver standpoint. I believe it’s before the caregiver gets so burned out that he or she’s no longer capable of providing care alone. The caregiver’s own health can be compromised if the strain is too great, so assisted living or other help, I think should be sought out before this happens, and that can free a person up to be a son or a daughter rather than just constantly be doing the physical things that drain you to the point that you can’t actually interact with your loved one on a personal basis, because there’s no time.
Erin: So, being isolated can actually cause the elderly person to first show signs of dementia?
Carol: Oh, it can certain seethe it. They can become more paranoid. My mother‑in‑law’s an example, so she did obviously have dementia, at that time, they weren’t diagnosing Alzheimer’s as much because they knew less about how to do so, and so that was never diagnosed. When she was so isolated, even though I went every day, I fixed her lunch, I got her groceries, I did everything, she got to the point she was afraid of everything out there. I mean, people become agoraphobic, they become afraid just because they only have their own company.
And you know, even younger people, if we’re alone in our own heads too long, our thinking can go off base. So, when you take an elder who maybe is afraid of, well, reads the paper, listens to the news, starts to get afraid and has no socialization or very little, doesn’t have a reason to maybe go out of their home, I think little by little they become more withdrawn.
And depression can be a problem, and also maybe paranoia which may or may not be from dementia itself as a physical cause, but it could tip somebody over the edge if they’re, say, leaning toward dementia.
Recording: This call is now being recorded.
Erin: Should be on. OK, there we go, I think we’re all right now.
Carol: Oh, OK.
Erin: Sorry about that.
Carol: No problem.
Erin: What topics do you typically discuss when speaking to caregivers?
Carol: I’m primarily a writer, but I do speaking. And I guess because I’m a writer, when I speak, I talk about the things that people ask me to write about. I speak on the pain of watching loved ones’ cognitive abilities decline, I speak about my dad’s surgery and how professionals can better work with family members to help them through the difficult times, and also how family members can help the professionals. It can become a very mutual helpful experience to work with professionals, or it can become antagonistic.
I speak and write a lot about people forging good relationships with paid caregivers who help our elders once they move to a facility or have in‑home care. It’s very, very easy for people sometimes to think they should get only one‑on‑one…You know, we all want the best for our elder, and people can unknowingly create an antagonistic relationship.
So, I speak about that, how important that is to try and work together as a team. And I speak a great deal, as I mentioned earlier, protecting the elder’s dignity, and also when it’s time to get outside help, and the other big one would be coping with siblings who won’t help, or those that criticize the help you give. Those are big questions from people, so I speak about those and many other things.
Erin: What tips can you give caregivers on caring for someone with Alzheimer’s?
Carol: First thing, don’t argue. An elder with Alzheimer’s is in a world that to him or her is as real as ours is to us. And if you argue with them, you’re just telling them they are wrong, and that obviously isn’t going to get us very far. If the issue isn’t vital to health or well‑being, just go along with the elder, it doesn’t hurt anything. I began doing that with my dad, because that was the only way I could keep him from being miserable. And at the time, psychiatric care was leaning in the other direction. I even had a psychiatrist yell at me for it when he found out what I was doing, that I was going along with Dad’s fantasies of life.
And within a few years, it had totally turned around and now they have what’s called the validation theory. And that seems to be the accepted theory is that you validate these people. When someone has dementia, their life is tough enough. And it doesn’t matter to us if they say the sky is green and the grass is blue. I mean, what does it matter? So, not arguing is very, very important. I mean, there are times, obviously, when we have to, or at least, try and divert them. But arguing doesn’t work.
Second, remember the person’s not a child, never will be a child. No matter how disabled he or she may become, the person should be treated with the respect and dignity of an adult.
And third, I’d say, among many, would be don’t ever assume that the person with Alzheimer’s doesn’t know what’s going on. People can be very sensitive of body language and vocal stress, even if they don’t seem to understand words. We really don’t know how much they’re taking in. And so, even if they seem totally in their own world, I always think that we should assume they understand more than we think they do.
Erin: Absolutely. OK, can you tell me about your blog and how the stuff on your blog may be helpful to caregivers?
Carol: My blog updates daily. And my topics cover anything from the newest studies on drugs or what may prevent Alzheimer’s or dementia or a healthy aging population, or help younger people age better and not get dementia. I cover, obviously, many issues on helping people provide care for their loved one, while trying to live a life of their own. I was a member of the sandwich generation before there was a term sandwich generation. So, I do talk about that quite a bit. I have a son with many health issues, so I was also caring for a son with health problems along with all these elders. So, I know a lot about being part of the sandwich generation.
It’s about setting boundaries and providing compassionate care. So, there is a wide range of information on the blog and it’s all centered around giving care or caring for the caregiver and the aging, in that context, there’s a great variety.
Erin: Great. Any other relevant timely information regarding caring for seniors that you want to tell us about?
Carol: I would say to make sure that you or someone else your elder trusts has a power of attorney for financial issues as well as a power of attorney to help make health decisions. This is vital. This document, sometimes called a health directive, should also contain a living will that hopefully, you’ve talked over with the elder so that you’re aware of the kind of care they would want, given the fact that things change and they may not be able to. But at least know their wants and needs so that you can help them if they can’t speak for themselves.
And also, I would say, never promise you love them that you won’t put them in a nursing home. Many of our elders still think of nursing homes, and there, unfortunately, are still some in the country that are the old military style and not very good. We still have far too many that are not. But a lot of them are very good, they’re coming along and realizing that hands‑on care and some of the new methods are helpful. So, that helps.
But the main thing is don’t promise that you won’t put them in a nursing home. Tell them, instead, that you’ll do your best to give them the best care possible with whatever tools are available. And just always knowing that we don’t know what’s going to occur. And so, caregivers shouldn’t have to live with the guilt of having a broken promise.
So, if we can avoid that, that’s good. One little note on that, if they’ve already made that promise, while they are care giving, they can pat themselves on the back and say they are honoring the spirit of the promise and if it should come that a nursing home is needed, they can be guilt free.
Erin: Absolutely. All right, thank you so much for your time, I appreciate it.
This week’s spotlight is on Anthony Cirillo a prolific writer, public speaker, elder care advocate, and widely recognized inspiration to the millions of seniors nation wide. His history with elder care and public speaking has given him the knowledge and ability to spread his knowledge and advice throughout the country being recognized by many national organizations.
Anthony started his career as a producer for CBS-TV in Philadelphia. He uses those skills developed early in his career when he appears on radio and TV as an expert in aging and healthcare including: the Carolina Business Review, Charlotte Today, CBS-TV Charlotte, NBC Jacksonville, WB in Tampa, and Ageing with Attitude; just to name a few. Many radio appearances have include, but are not limited to: WS Radio, Age Wise Living, Coping with Caregiving, Charlotte Talks, University of South Dakota Elderlaw Forum, First Talk Hickory, and more.
As a Fellow of the American College of Healthcare Executives, Anthony consults with healthcare organizations globally. He is the About.com guide to assisted living and a member of the board of CCAL, the Consumer Consortium for Person-Centered Living dedicated to improving the lives of seniors. And as a Healthcare Channel Partner for CEO2, he helps organizations lead from the heart. Anthony knows the ins and outs of healthcare delivery and is currently working with the National Council on Aging on their Self Management Alliance.
As an experienced thought leader in the healthcare industry, he knows how to navigate that industry. As someone who spends thousands of hours a year with seniors and caregivers, he understands consumer perspective and needs.
Anthony shares that knowledge with consumers in many ways. Anthony is a prolific writer, having written hundreds of blogs and articles. In 2011, Anthony wrote two of the top three blogs on Hospital Impact. In addition, he is often cited in the press including wide-ranging publications such as USA Today, Fierce Healthcare, CBS Interactive, and Business Journal publications. His blog, Who Moved My Dentures and corresponding video blogs help consumers understand the healthcare system while imparting ways to live a quality life. The blog is listed as one of the top boomer blogs by AllTop and feeds to other health sites including Dr. Oz’s Sharecare, contributing to Anthony’s online Klout influence that tops 60. His book of the same name dispels myths about aging.
Anthony fell into a duty and activism for elders when he started performing in nursing homes. A gifted singer-performer, he has been to Nashville to record and has sung around the country. He uses his performing gifts in his keynote speeches and press engagements.
Anthony brightens the lives and promotes the quality of life and the dignity of caregivers and seniors. And he is an outlet that helps businesses reach and connect to boomer and senior audiences. If you would like to learn more about Anthony, his events, speaking engagements and upcoming endeavors be sure to visit his website http://anthonyssong.blogspot.com/.
The Adagio Adult Family Home, a unique assisted living home geared toward the needs of residents living with dementia stemming from stroke or other vascular disorders. Run by resident providers Maxine and Harvey Brink, residents are cared for as if they are a member of the family. You will find that this facility provides an extraordinary level of care for your loved ones at a reasonable cost in a family setting. Once they join the Adagio family, you are all now considered part of the family and always welcome with their open door policy.
Located just north of the Puget Sound in Everett, Washington, Adagio is situated on a beautifully landscaped lot on a residential cul-de-sac that is home to families and retires alike. With a beautiful view of Gardner Bay and the nearby mountains, residents are encouraged to enjoy the outdoors through supervised strolls along the cul-de-sac and walks through the professionally landscaped gardens on the grounds.
Even though this facility is licensed for up to six residents, the Brinks keep the limit to three or four residents at a time to be able to provide individualized attention to all. Support is available 24-hours a day from certified and registered nursing assistant who are overseen by a registered nurse with over 30 years of experience with geriatric care.
When asked what sets this facility apart from others Maxine will quickly respond, “We strive to create joy and create pleasure based on small moments, which help to provide a sense of contentment.” This philosophy is based on the author Jolene Brackey’s teachings of how even though dementia and Alzheimer’s patients suffer from short-term memory loss and not remember what they did, the sense of how it made them feel remains.
Perhaps one clue to the uniqueness of Adagio is when you first walk the door and are met by the smell of food, whether it is something baking in the oven or simmering on the stove. This lends to the feeling of being home, according to Maxine. As food is one of the joys in life that becomes ever so more important as we age, menus are tailored to the residents’ tastes and eating abilities. There is no set menu that all must eat and offerings will change often to reflect this. All meals are served family style with Maxine, Harvey, and whoever else might be visiting at that particular time eating with the residents in a family setting. Residents’ families are always welcome to partake in mealtime.
Activities at Adagio are constantly changing to the residents’ interests and abilities. If one resident prefers to not take part in a specific activity, they are encouraged to do something else that they enjoy. S “One week the book case may be loaded with puzzles, the next games, or an entire different offering of books,” Maxine says. “Recently residents enjoyed a beautiful fall afternoon sitting on the deck watching boats sail by on Gardener Bay, which is an activity they all look forward to.”
Residents are encouraged to take part in “activities of daily living” as their abilities allow. This allows them the satisfaction of feeling they are doing their part in the running of the home. Family members can feel at ease with their loved ones living at Adagio as it is in every sense a home. They often remark how much this facility feels like a home and how they feel welcome when visiting instead being considered an intrusion.
If you are considering placing your loved one a facility as they transform toward an “adagio” or slower pace in their lives due to dementia, the Adagio Adult Family Home should be on your list of considerations in the northwest Washington area. You can rest assured that they will be well cared for in a loving, nurturing, and safe environment that embraces the individuality of all.
There’s so much to consider when thinking about a move to a senior living community, and most folks have a checklist of their most important considerations.
The Allegro community in St. Petersburg Florida certainly exceeds expectations for even the toughest of lists: from trust in the respectful, considerate staff, to the security of their facilities and costs comparable to your current daily living. Allegro offers both assisted living and skilled nursing care with the highest qualified staff, and residential options that provide all the privacy of your home – without any of the maintenance.
The chores of daily life are simplified with housekeeping, linen and room service. (Why not let someone else take out the garbage or mow the grass?) And whether you choose to take meals in your room or “dine-out” in the restaurant-like setting, your three daily chef-prepared meals promise to be a culinary delight.
Any of those are wonderful (and practical) reasons to consider Allegro. But what makes Allegro really different? Tom Howard, Community Director at the St. Petersburg location, says it’s really about ”our size and our people.”
Tom explains that the Allegro offers a boutique hotel feel – with everything from being right on the water and the manicured grounds to the beautifully appointed interiors. Many visitors remark when they step into the building that they feel as if they are in the lobby of a resort hotel.
And as for people, Allegro stands apart from other facilities. “Our team members bring passion and pride to what they do every day. We have a staff that truly cares and are part of a family – not just a building,” Tom says.
So now that we’ve “checked off” the important practical concerns of such an important decision – let’s consider some of the less practical (but more fun) aspects of living at Allegro…starting with that boutique hotel feel.
Allegro at St. Petersburg really does provide all the amenities of a five star vacation – every day. After waking up to the beautiful waters of Boca Ciega Bay, you can take a leisurely dip in the perfectly heated outdoor pool and whirlpool, or just relax with friends in the cabana! If gorgeous greenery is more your flavor, treat yourself to a stroll through the landscaped garden paths, hit the putting green, or take in a few holes at any of the many nearby golf courses.
Should you ever tire of the vacation lifestyle – options for intellectual stimulation are limited only by your imagination. Consider a continuing education class at nearby Eckerd College, visit the onsite library to grab a good book (or two) or, do your reading online in the computer center with complimentary internet access.
But, if you are more in the mood for a good debate (or just some friendly conversation), you can meet-up fireside with like-minded intellectuals in the great room or attend one of the many special events hosted by the full-time onsite activities director. When asked about the great diversity of options available to the Allegro Community, Tom says: “Our activities really focus on mind, body, and spirit. And we try to offer freedom of choice and time in everything we do.”
Allegro at St. Petersburg provides a truly unique solution: delivering the practical necessities of daily living with a caring, dedicated staff – in an environment that could compete with the best of vacation properties.