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Elder Care Story: Managing Long-Distance Care with Support

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client elder care plan

Today we share an elder care story from a long-time Aging Wisely client, in the words of her cousin who helps manage her elder care from a distance. Mary became a client back in the early 2000s, when our team was engaged to help with some planning decisions.

Joe Skalski, elder care from a distance

We’ll let Mary’s cousin, Joe Skalski, describe in his words why our elder care team was engaged and how we have helped:

I used Aging Wisely to help Mary back in the early 2000s to assist with some life decisions. Mary’s parents provided for her care well into their 80s, but then her father died followed by her Mom’s entry into an assisted living facility that specializes in care for Alzheimer’s patients. Mary had been so dependent on her Mom and Dad after the death of her husband decades ago.

As Mary’s parents aged, there was quite a gap in her care. Some family members have pitched in here and there to help out a great deal, but of course we all have our own lives to run as well, our own work that requires time and dedication, and our own immediate family members for whom we must also dedicate time and effort. Aging Wisely took care of getting Mary emotionally healthy to continue independent living and making sure some of her important needs were being addressed despite her disability and inability to meet certain needs on her own. 

Joe contacted Aging Wisely again in 2013 to provide supportive services to ensure Mary could continue living independently, while staying safe and healthy. She has a local family caregiver who takes her to medical appointments and EasyLiving caregivers, arranged by her elder care manager, who visit twice/week for some household and personal care tasks, socialization and transportation. When Joe contacted Aging Wisely this time for services, he was particularly concerned about her transportation needs, ensuring she got her medications and was taking them properly and the need to develop a system for her spending money needs beyond what her food stamps covered.

Whether it came to getting her a podiatrist who does home visits, making sure her laundry is done or having someone assist her with grocery shopping, I can rest assured that my cousin is being taken care of despite the 500 miles that separate us.

As our elder care team works with clients in many different situations, our goal is always to increase the client’s (and family’s ) quality of life. This means different solutions for different people, but also a focus in the way we interact with clients and the expectations we set (and advocacy to ensure ongoing quality) for those who are engaged to assist them (be it their household help, elder care staff, medical providers or assisted living staff). This focus means we often hear the kind of feedback Joe mentions below.

Mary consistently gives me great feedback on her interactions with Aging Wisely staff and the personal care helpers they have coordinated for her.

The end result is a more positive experience of life in general, the ability to live the fullest life possible despite health issues or other limitations. We’re pleased to hear Joe’s description of how this has worked for Mary:

She has gone from a state of constant fear for the future to one where she looks forward with a degree of confidence she never had before. 

For the concerned family member like Joe, the result is peace of mind. Our elder care team prides themselves on communication, and each client care plan lays out how and when we should communicate with involved family members or other caregivers as well as expectations for visiting and emergency response, goals and plan.

As Joe shares, Their regularity of reporting to me has been quite a comfort.

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A Better Approach to Eldercare

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eldercare team

This client circle of care depicts the care team involved with an elderly or disabled client (also known as “the patient”, “Mom”, “Dad”, “Aunt Betty”, “resident”, “care recipient”). As our founders, Linda Chamberlain and Dr. Kerry Chamberlain, presented on “A Better Approach to Eldercare” at last week’s Aging in America conference, the focus was on how to harness the power of this care team to ensure the approach remains centered on the client.

The first stage in this approach is the beginning conversation. Too often, conversations around eldercare are done within silos and are focused by what the particular specialty wants to cover. Rather than working together (and starting with the client’s priorities), the individual may be blind to what is going on in the client’s life outside his/her office. Unfortunately, this can turn the experts’ best solutions in to failure.

In “A Better Approach to Eldercare”, Linda and Kerry discussed using a comprehensive questionnaire to begin this conversation. This serves to help the client and family gather facts and information that will be needed to make informed decisions and gets information organized to spur the conversation (i.e. bring up “issues”). While a professional may not immediately address all the issues (or ever address them in his/her specialty specifically), having a broad sense of information guides the conversation, helps inform proper recommendations and points to issues that need to be addressed to make the whole puzzle work. It is also vital to understand what the client’s and family’s main concerns are. A good questionnaire and initial meeting help draw out these, often unspoken, concerns.

Some of the top concerns and issues elderly clients might have include:

  • Ability to stay at home
  • Costs to stay at home
  • Trying to keep children happy and not rock the boat
  • Refusing children’s care
  • Remaining the parent, even when ill
  • Loss of dignity
  • Not being a burden
  • Choosing the right people to name in their legal documents
  • Ensuring loved ones understand their wishes and recognize the boundaries

Some of the common family concerns (besides the major underlying thread, which is usually worry over Mom or Dad’s well-being and a desire to ensure it moving forward) we see in our work include:

  • Children concerned parent cannot afford desired choice
  • Children concerned regarding their potential need to help pay or provide for care
  • Family turmoil and breakdown over lack of direction by parent
  • Sometimes it comes down to one of the biggest decisions which is whether to spend all the money on any care needed or protect assets and choose Medicaid/public benefit options (particularly when long term planning was not done in advance).

With a proper understanding of these issues and a good conversation started, the professional can now share his/her expertise with the client and family to help them understand topics that need to be addressed and implications of different decisions/options. Check out our checklist of items to review during eldercare planning with the client and family, for more detail.

Coordinated eldercare planning centered around the client offers an approach which not only works, but helps all members of the client care team do a better job. The benefits of coordinated planning include:

  • Choices for the client and family (planning opens up more options)
  • Reduced suffering
  • Peace of mind
  • Maintaining dignity and independence
  • Bringing together the power of your circle of care (rather than dividing their strengths and potentially working at odds)

For more information on eldercare planning, contact us at 727-447-5845 and read our blog for regular updates and information. You can email us to receive our monthly Wise Words™ newsletter or to meet to talk further about coordinated eldercare planning for your loved one or client.

 

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Eldercare Around the World

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worldwide eldercare and families

Dispatch from China by our mobile Director of Communications

With a long interest in eldercare, I’ve always taken note of the older people anywhere I travel. I try to learn and observe how elders are treated in different societies, as well as find out different nuances about how families and the country’s systems manage care for elders needing assistance.

Having lived in the People’s Republic of China for almost two years, I am slowly learning more about this culture and have tried to do a lot of reading to overcome some of my ignorance, and many misconceptions.  There is a lot about the “Eastern” versus “Western” perspectives that can make it a big gap to bridge.  For anyone interested in this subject, I highly recommend The Geography of Thought: How Asians and Westerners Think Differently…and Why by Richard Nisbett as a good primer (based in research).  Clearly, filial piety, group/relationship orientation and an intergenerational focus provide the framework for caregiving here.  Traditionally, this is a culture very based in familial responsibility and generations caring for one another, living together, etc.  Lessons from Confucianism, Buddhism and Taoism form much of the value system. Of course, China also has a unique historical and political history to contend with in terms of its system and norms.

Now, China (in so many ways) is struggling with a rapidly changing society and various repercussions.  The top one when it comes to eldercare being that (recurrent) theme of declining birth rates/availability of younger generation to help the older.  In China, this has presumably been exacerbated by the one child policy.  Additionally, as the population becomes rapidly wealthier and living conditions improve, life expectancy has increased.  The family structure of today is often called 4 to 1, i.e. four elders (two parents and two grandparents) for one adult child to care for.  In a culture where (despite my grade school idea of “communism”) there are few safety net supports, the burden of care typically is both physical/emotional and financial.  Additionally, there has been a mass migration of rural people to cities for work opportunities over the past few decades.  Many times elders remain in the villages, often with the grandchildren (at least until the parents can afford to bring them or they are old enough to go to school).  Now, many rural communities are home almost solely to older residents and these very young children.  Benefits such as schooling and healthcare are also tied to the residency system (hukou), adding challenges for the migrant worker families.

Many societies are struggling with providing for our elders under modern conditions, and we can learn a lot from each other’s problems and solutions.  China has recently seen the “import” of some western concepts of eldercare help, from a couple of international private duty home care companies starting services here to the first private assisted living facilities.  A subsidiary of Emeritus opened a facility in Shanghai last year, which I hope to tour at some point.  A care facility here has typically been seen as a last resort for the very poor, so this concept is a huge leap.  It sounds as if the companies have done their homework on trying to make some cultural adaptations.  However, I understand that the care facility is only operating at about 20% occupancy, so it is far from a wild success at this point.

Clearly more options are going to be necessary as things change.  There are not going to be easy answers for China or anybody else as we all work towards meeting the challenge of caring for our elders. There has been a lot of discussion about changes to the one child policy (there have always been some exceptions to this rule for rural families, ethnic minorities and those who can pay a penalty fee) and some adaptations have been made to attempt to alleviate the pressure of the “4 to 1” structure for two only children marrying. Interestingly, some research points to the fact that, policy or not, many young professionals no longer desire to have more than one child (as we are seeing in most European countries and Japan, where the population shifts have been dramatic).

Another aspect of eldercare that has continued to crystallize for me here is the challenge of long-distance caregiving. As the entire world becomes more mobile, more of us face this issue. The expat community in Shanghai is very large, estimated at about 200,000. I probably have at least one conversation each week with someone who is concerned about an aging parent at home. One friend has a daily check-in phone call with his parents and he and his wife make several trips back each year to handle appointments, check to see how things are going and make arrangements and plans. Another friend expressed her suspicions that Mom has a chronic illness and has not yet told the family. I personally had the experience a couple years ago, while living in Spain, of getting the phone call in which my Mom told me she had two brain tumors and would be going in for surgery within the month.

Fortunately, technology has made it easier for us to keep in touch and travel quickly and we can avail ourselves of many resources to assist. In the U.S., we’re fortunate to have a very strong geriatric care management profession, which is well-equipped to support long-distance caregivers with services like geriatric assessments for a clear picture and road map. Of course, what is available in each country varies in addition to the family’s personal and economic resources. Given that, I am hopeful however, that most of us can now access better information to understand options and we can share ideas and resources worldwide to help us all better care for those we love.

These are so many different cultural perspectives on eldercare and healthcare, as well as innovative ideas in different communities. I would also love to hear from you about your experiences (feel free to leave us a note or connect on social media). I look forward to sharing more about what I learn from my travels and research!

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A Daughter’s Experiences in Eldercare

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A Tale of Two Transitions: My Divergent Stories about Helping Aging Parents Move to Assisted Living

A few years ago, my widowed mother-in-law began having trouble managing at home. We lived about an hour away and had been called three times when she fell or had a medical crisis and was taken to the emergency room. We also saw that she was limiting her movements in the home to one room and no longer cooking. My husband helped her with bill paying and visited regularly, but it was apparent it was time for a change. We felt the best option, especially as she seemed to be more lonely and isolated, was to find a good Assisted Living Facility closer to us (she refused to move in with us and we were busting at the seams with two teenagers at home anyway).

We asked around among some friends and went on a few tours of local facilities. We fell in love with a beautiful facility about 10 minutes from our home and thought it would be perfect for her. My husband went over to talk to her about what we thought would be best. Well, to put it mildly, the conversation did not go well. She felt blind-sided and had a lot of reasons why a move was “impossible”. My husband listened to her and decided to regroup and perhaps approach this slowly over time, i.e. “work on her”. I think a lot of her initial reluctance was fear and feeling overwhelmed with such a big change. We did eventually convince her and took her for a visit to the assisted living facility. She was very quiet and later told us she felt it was “awfully fancy”. We thought it was gorgeous and wanted to move in ourselves! We knew we’d have to help contribute some money to her monthly costs, but figured with the time we were spending running back and forth to her home, it would be worth it.

We arranged movers, helped go through her things (completely exhausting both her and us with the emotional draining process) and set up the move. The day of the move was not so great. She was upset; we were busy trying to arrange everything and we felt less than welcomed at the facility. They had a nice flower arrangement for her, and helped with logistics but things were fairly disorganized. Unfortunately, we arrived just after lunch (but without having had any ourselves) so we had to run out and get something for her as she missed the facility’s lunch time. Eventually, she began to settle in but remained reluctant to participate in the many activities offered. She began to need more assistance, and her fees went up quite a bit to get her the extra help. We realized our idea that we’d be saving so much time and stress were slightly off the mark, as we were at the assisted living facility or in touch with them almost every day.

She began having more medical issues and had a number of hospitalizations. At one hospitalization, we spoke to the facility staff and they felt her needs were beyond what they could handle, unless she got additional private-pay caregivers for many hours. She and we could not afford this. It was only later that we even began finding out about any options for financial assistance, some of which would have helped with better planning initially. The decision was made for her to move to a nursing home. Again, we were in the dark about which places were good but we looked up some information on the internet and picked a place. It did turn out to be a good place with good staff, but we were feeling very unsettled and anxious trying to make all these decisions. She never really recovered from her recent health issues and we lost her within a few months. I think we did all we could with what we knew and we certainly worked hard to do the best for her, but we learned quickly that you rarely “know what you don’t know” and we were in the dark about a lot of eldercare options and Florida aging services resources that could have helped.

Part 2:
As most of us “Boomers” can relate, this was not the end of our years of “caregiving” as my Mom and Dad were a bit younger but also beginning to have more health difficulties. After our prior experiences, we sat down and talked through a lot of these healthcare and aging issues with Mom and Dad. We asked them what they wanted should they need help and opened up a discussion about the financial side of things, so that we had a better idea where things stood for them and could begin doing a little research. We made sure they had their advance directives and legal paperwork in place and got introduced by them to their attorney and financial advisor. After Mom had a stroke, her financial advisor suggested we may want to meet with a professional who helps with aging issues, a geriatric care manager. We set up a consultation appointment with Aging Wisely. Mom wasn’t able to attend this first appointment, but Dad came along.

We filled out some paperwork before the appointment and had a great first meeting. It was reassuring to know we were talking to a Florida senior care expert, but one who wasn’t working for a particular facility and could help with anything from home care to assisted living to financial resources. We got some recommendations and began implementing them to get Mom home safely from the hospital. We decided after a couple months to hire the geriatric care manager to help oversee things and attend Mom’s neurology follow up appointments (in this case we lived over an hour away and we also knew the care manager had a better handle on the questions to ask and how to advocate for Mom). Mom and Dad had some wonderful caregivers to help them at home and the care manager had a number of suggestions which helped with their various needs. The biggest comfort was probably just knowing that if a crisis arose, I could pick up the phone and have an expert right there to help me (or even console me as I felt I was boring my friends with the constant stories and woes).

A couple years later, we were at a transitional point again as Mom’s health had worsened and both were feeling overwhelmed with the household. We delved once again in to the world of finding a good assisted care facility and making the transition. This time it was an all together different experience. Our care manager already knew Mom and Dad and helped us to quickly narrow down the options that were not only quality places, but the right fit for Mom and Dad’s needs (which can be even harder when trying to accommodate a couple, at varying care levels). Our care manager arranged for tours/lunches at each of the facilities for Mom and Dad and they felt very involved in the decision.

It is almost too much to list, but here are a few of the other things the Aging Wisely care manager did for us:
• Reviewed the payment options/contract and helped us ask important questions to ensure understanding, as well as negotiate some of the fees related to the move.
• Connected us with the local Veterans Service Office to begin the process of applying for Veteran’s Aid and Attendance benefits.
• Helped us map out the move process and move day to make it less stressful for everyone.
• Made arrangements the day of the move to reduce the stress on Mom and Dad as well as introduce them to their new home (and suggested things like how to integrate their favorite caregivers as they made the transition).

I share this story because I want others to know there are options. You care for your loved ones and will do the best job you can, but sometimes doing the best job means knowing who can help you. A professional knows the questions you won’t even think to ask. An independent advocate made such a difference to our family and I know they can for yours as well. When it comes to eldercare and resources for the elderly in the Tampa Bay/Pinellas County, Florida area, Aging Wisely is the go-to resource.

We appreciate being able to share stories from caregivers and welcome contributions that may help other families facing caregiving and eldercare concerns. Contact us at 727-447-5845 about sharing your story, or for more information and assistance with caregiver consultations and Florida geriatric care management and senior care services.

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Our goal is to enable every individual we work with to live the most fulfilling life possible, with utmost dignity, focusing on their physical, mental, spiritual, family and financial wellbeing.