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A Preventable Disaster Saddened and Frustrated Me

“Living with a Visionary” is a beautifully written essay by John Matthias, Professor Emeritus and writer, published in the New Yorker on February 1, 2021. It starts out as one of the most touching descriptions of living with a person with dementia that I have ever read. His wife, Diana, had Lewy Body Dementia and he describes, with skill and compassion, how he took care of her and learned to cope with her bizarre hallucinations, so typical of this condition.As the story unfolds, it becomes much darker and it ends with a disaster that could have been avoided.  My heart went out to him and to his late wife as he described their struggles to keep going as her dementia progressed. He became lost in her bubble of unreality and neglected his own self-care. A crisis is reached when Diana is found wandering outside and the neighbors call the police. They are both taken to the hospital. Diana is sent to an assisted living facility near their daughter and Mr. Matthias is finally discharged back home. Meanwhile, Diana catches COVID-19 at the assisted living facility and dies. Due to the pandemic, Mr. Mattias is unable to travel to be at her side.

I was deeply affected and shaken by this article and by this couple’s unnecessary suffering. They were educated, sophisticated, and obviously had some financial resources. We can’t prevent all heartbreak, but so much of their ordeal was preventable. Their story highlights the importance of planning for one’s care before the crisis. This couple and their daughter would have truly benefited from developing a relationship with an Aging Life Care Manager® when Diana’s dementia was first diagnosed or preferably when they were both still in reasonable health and able to plan for their futures. Aging Life Care Managers are trained to work with older people and their families to help them stay as independent and as safe as possible for as long as possible. We are experts in dementia and end-of-life and we support couples and individuals as they age. Many of us work with people with disabilities and with mental health issues. We ensure that clients are safe and receiving adequate care, but more importantly, work with them to enhance their quality of life.

Since this article was published, I started working with a family in a very similar situation. The couples’ son contacted me about two years ago when the dementia of the husband Peter was starting to impact their lives. At the time, his wife, Susan, did not see the necessity of meeting with me.  Recently, Susan was hospitalized for a medical condition, and Peter, who now has quite severe dementia, became distraught and aggressive. The police were called and he was hospitalized in a psychiatric unit. The son contacted me when the hospital refused to discharge Peter, as he was still agitated. I helped facilitate Peter’s transfer to the convalescent hospital where the wife was receiving care. As soon as he was back with his wife, he calmed down. I assisted in the discharge process, coordinated their return home with 24-hour care, and referred them to a company that could make needed safety accommodations in the home.  An important aspect of this process is the support and counseling I am providing to the couple’s son in dealing with his fiercely independent mother who is finding it very hard to accept strangers in her home. This is what we do!

If I had been involved sooner, we may have been able to prevent some of this mayhem. But without the help I provided in navigating these treacherous waters, Peter would have stayed at the hospital for much longer and might have declined to a point where he could no longer live safely at home. The son might have caved into Susan’s pressure and agreed to inadequate care on their discharge home – and this would have brought about another hospitalization and more chaos. Aging Life Care Managers are not miracle workers, but we can help families in tough situations.

I encourage you to have open conversations about you and your loved ones’ situation – it is never too soon. Reach out to a local Aging Life Care Professional®. We are there to help you plan your lives as you age, and also to step in when needed in a crisis.

About the author: Brenda Shorkend, MA, CMC is an independent Certified Aging Life Care Manager at Shorkend Care Management. She has extensive experience working with older people and people with disabilities and their families. She has a background in rehabilitation psychology and is a strong advocate for her clients. She is Chair of the ALCA Standards Committee.

Racial Bias in Requesting Caregivers: How to rise above this problem!

“My father will not tolerate a ____________ (fill-in-the-blank) caregiver.  Can you promise me a ____________ one?”

Having run a home care business for over 30 years I have heard this request many times over to my disbelief and sadness that an adult would not just want the best trained, most experienced, and kind caregiver for their parent.   However, these types of requests continue and most home care staff like mine explain to families that we do not discriminate and base our matches on needs, training, interest, and personalities.  Sometimes they just hang up and move to another agency with the same request.

Families usually blame the elder for the request and say they are not biased, but that their parent would not let an XYZ in their home because of a past incident with someone of that background or because of dementia.  This is where we talk about working with a professional Geriatric Care Manager, now also called an Aging Life Care Expert(r), on how that person would work closely with their family member in making the match work.

If this is something you have experienced with a parent in need of care, there are lots of approaches that can help break that color or nationality barrier.  What a professional care manager will do before bringing in a caregiver is to meet the elder or talk to them on the phone about their interests, their life story, and their current needs.

We hear that your dad was in the Navy and has a passion for sailing; he loved to play softball, had a vegetable garden, and loves country-western music.  We also hear that he needs some fitness training to build strength after a long hospital stay, lives alone, and is a little depressed.  The daughter has no idea where his bias came from, but she has heard him over the years talk despairingly about certain groups of people and that is why she made such a request.

We will take all those interests he has and find a match and tell him about the person before the introduction.  We will also let the caregiver know he might not be the most cordial based on information from the family.  A wonderful black caregiver of ours who was chosen caregiver of the year said that she just walks in the first day and says, “You really don’t want me and I know it, but give me a chance and see what we can do together to make life better.”   She says it is not just about her color but about “care” in general – no one really wants to be interdependent.

One thing I have seen in this circumstance is that we send a caregiver that loves to garden, also was in the Navy, and enjoys singing country-western.  The caregiver might also have been a physical therapy assistant and can help him meet his goals to walk without a walker.   We tell the client that this is just a trial assignment and he has to agree to keep the caregiver for two weeks and if he is unhappy after the two weeks we will look for another match.

Nine times out of ten this approach works with clients resistant to care or who had expressed a bias against some group of people to family in the past.   When this works it is most often a match made in heaven and the relationship becomes stronger and the individual with the bias, even if they have dementia, just sees a loving, caring, companion who is making their life joyful again.  It is actually very beautiful to see and witness these types of relationships.

To find a professional Aging Life Care Manager to help you, and your family, find the right care for your elder loved one, heal the racial bias, and build a good relationship of care and quality of life, go to the “Find an Aging Life Care” professional search at www.aginglifecare.org. Simply enter your zip code and you will receive results of Aging Life Care Professionals you can then interview to find someone who can assist with this challenge.  Aging Life Care Experts have backgrounds in counseling, gerontology, mental health, nursing, occupational therapy, physical therapy, psychology, or social work; with a specialized focus on issues related to aging and elder care.  Most are also certified as Care managers besides their educational degree and/or license.

About the Author:  Linda Fodrini-Johnson, MA, MFT, CMC who is a consultant, counselor and coach for family caregivers.  Linda is in the San Francisco Bay Area and can be reached at LindaFJ620@outlook.com or www.LindaFodriniJohnson.com.  Linda has been a care manager since 1984 and is a Past President of both the National Association of Geriatric Care Managers now called the Aging Life Care Association and of the Western Chapter.  She owned a full-service care management, home care, and family education business for 30 years and sold it in 2019.  She has received numerous awards and those can be seen on her website.

Dad Had a Stroke… Now What?

Mr. Smith is 79 years old. A week ago, he had a stroke while home alone. Thankfully, his youngest son arrived minutes later and got Mr. Smith admitted to the hospital.

After a week, the hospital discharge planner contacted Mr. Smith’s oldest son, Paul, who is listed as his healthcare POA (Power of Attorney). The discharge planner emailed Paul a list of rehabilitation facilities. He was to select the top three places in order of preference for his father’s rehabilitation. Paul would need to make his selections by the end of the day, as the plan was to move Mr. Smith the following day. Naturally, Paul was overwhelmed; he wanted to pick the best place for his dad but had no idea what any of these places are like. One place is listed as a nursing home; another as  a health care campus. What are the differences? A nursing home is the last place Paul wanted his dad to be.   

First, it is helpful to understand the terminology. It can be very confusing, as multiple words are used interchangeably to describe similar services and places:  Skilled Rehab, Skilled Nursing Facility, Long-Term Care Facility Continuum Care Campus (CCC), Health Care Campus. Generally, all these places offer skilled rehabilitation services in addition to long-term care. Further, some offer Independent Living, Assisted Living and Memory Care. 

Skilled Care and rehabilitation typically refer to inpatient, medically necessary services offered by licensed nurses, physical, occupational and/or speech therapists. Skilled services or rehabilitation are temporary, time sensitive and expensive. Usually, rehabilitation is partially covered by Medicare, Medicaid and private/supplemental insurance.

When patients arrive at a facility for rehabilitation, they are assessed by the skilled services team, often referred to as the therapy department (PT, OT, speech and nursing). The therapy or skilled team determines the person’s needs and goals. A plan is developed to meet the intended goals within a determined period. An individual will either progress, stay the same or decline. 

Let’s suppose that Mr. Smith has made little progress after three months of rehabilitation services at a Skilled Nursing Facility. He remains paralyzed on his left side and requires assistance to do most things… getting dressed, hygiene, cutting food, getting in and out of bed. All these activities are referred to as Activities of Daily Living (ADLs).  

At this time, Mr. Smith will no longer qualify for skilled services or rehabilitation. He still is not able to go safely home, as his needs are too great. He will now require what is called custodial care. Custodial care means an individual needs assistance with ADLs but does not require or qualify for skilled care or services. A caregiver/aid can provide custodial care to meet all his ADLs, and his ongoing medications and medical needs will now be considered part of his custodial care needs. Mr. Smith has completed his rehabilitation and is now moving into a long-term care situation.  

 Long-term care refers to a facility providing custodial care. Individuals for many different reasons are not able to receive custodial care safely in their homes, therefore require a long-term care facility (often called a nursing home). Long-term care facilities offer services which include Skilled Rehabilitation. Mr. Smith started out in short-term skilled rehab. After a period, he no longer showed improvement, despite receiving skilled services (physical, occupational and speech therapies). He then required custodial care. His family would not be able to safely provide the care he continued to need 24/7. 

Mr. Smith then “moved” to Long-Term Care within the same facility. Sometimes a facility will divide their building into sections with skilled services and rehabilitation in one area and long-term care in another. Others may provide skilled care and when the person requires ongoing custodial care, those services continue in the same room. What changes between skilled rehabilitation and long-term care are the type of services and costs? 

The first step in making informed choices about where to go for rehabilitation is to understand the differences in services offered at a facility. Other considerations include: What happens if a person is not able to return home after receiving skilled therapy services? Are long-term care services or custodial care offered and what are the costs? We will tackle these questions in next month’s blog entry, when Mr. Smith cannot return home and settles into Long-Term Care.

About the Author:  Jennifer Beach, LSW, MA, C-SWCM established Advocate for Elders in Rocky River in 2010. Jennifer has 25 years of experience in working with and advocating for older adults and their families. Jennifer is a licensed, insured Social Worker and an Advanced Aging Life Care® Professional. She has served as the Midwest Chapter President of the Aging Life Care Association and additionally served 7 years on the Board of Directors. In 2018, Jennifer was honored as the recipient of the ALCA Midwest Chapter Outstanding Member of the Year Award. Learn more at advocate4elders.com.

Jennifer is also a monthly contributor and author of Caregiver Corner for Northeast Ohio Boomer and Beyond blog and magazine.

Tips on Mask-wearing for People With Dementia

Although the temptation is strong now that vaccines are gaining distribution to become more relaxed about COVID-19 prevention, we cannot afford to let down our guards and stop masking up. In the United States, the CDC recommends anyone older than age 2 wear a mask, but there are many who are resistant to wearing one, including some people with conditions like Alzheimer’s disease. This may mean missing out on safe ventures outside of the home, to stores or other indoor venues.

Here are some tips from our friends at DementiaUK and Alzheimer’s Society on how to help people who have dementia or Alzheimer’s to stop resisting mask wearing.

Why might a person with dementia or Alzheimer’s struggle with the idea of wearing a mask?

Individuals with dementia may be uncomfortable with the mask’s texture or feel. Experimenting with different materials, using a familiar scarf as a mask or engaging the person in choosing their own mask or in making one, could help. Making this a fun activity can go a long way in helping them get over the discomfort. Also, always putting the mask on at home, instead of in public, can lessen feelings of stress around mask-wearing.

What about if it’s a matter of discomfort from fit?

If the way the mask fits is an issue, trying varied styles could work. And if the person with dementia is afraid they may not be able to breathe, you can reassure them via demonstrating how it works best and trying to help them to remain calm.

What if they just resist the idea of wearing a mask?

Practice putting on your mask in front of the person with dementia and ask them to mirror your steps. This may reassure them. Also, you’ll likely continually need to remind them to wear it, but try not to use unfamiliar words like pandemic, and instead say virus or infection—words that would already have been in their vocabulary. With dementia it can help to bring up the past, so you might reference a flu they have had.

Another idea is to put a sign by the door for when you leave. Then gently remind the person that the virus is ongoing and they need to protect themselves and others.

What if the masks remind them of past trauma?

In some cases, perhaps rarer in the United States, masks may remind the person with dementia of a traumatic incident, such as having been in a war in their youth.

Talking about what they’re feeling, if possible, and trying to find ways to reassure them should help.

What if they feel they are the only people encountering this mask problem?

In this case it may work to validate their feelings, reassure them and help them to live as comfortably as possible during this “new normal.”

How best to talk to someone with dementia while wearing a mask?

Communicating while wearing a mask is challenging for people without dementia, but for those talking to older adults with Alzheimer’s or other dementias, it can be particularly challenging.

Some tips for this include using short, simple phrases and hand gestures; remaining clear, calm and friendly; smiling big enough that it’s evident in one’s eyes; thinking about body language, possibly mirroring their gestures if that helps to connect; and being empathetic, trying to understand how they are feeling and support them as patiently as possible.

If, despite all methods, the person still does not want to wear a mask, there are cards to carry and hand out to concerned people indicating that the person has Alzheimer’s or dementia. In this situation it’s important to always stay more than 6 feet away from others. And this may mean no indoor shopping or visiting.

This article originally appeared in the American Society on Aging’s Generations Now blog.

Crisis Management and Beyond: Social Workers in Aging Life Care

With March as Social Work Month, we love highlighting our Aging Life Care Professionals(r) with this background. Here is a piece from member Susan Valoff.

Originally appearing last year at the onset of the COVID-19 pandemic in the United States, we can see how social workers still are offering a unique level of care one year later.

In these days when everything feels upended, there is no better time to recognize the tremendous value that social workers bring to our country and our world. As I write this, social workers in hospitals, non-profit agencies, and government settings are counseling people in crisis; linking families in need with food, shelter, and medical care; and helping individuals suffering the loss of their jobs, their health, and their loved ones.

I am proud that social workers are well represented in the field of Aging Life CareTM. We make up about one-third of the membership of the Aging Life Care Association, bringing with us a rich history of social reform (think Jane Addams and Edith Abbott); a commitment to addressing our clients’ mental health needs; and a whole lot of empathy and compassion.

Like many of my social work colleagues, I was attracted to the field of Aging Life Care because it allowed me to use all of my knowledge and skills as a social worker. In fact, when you look at the core knowledge areas of Aging Life Care, it is almost like reading a transcript of the courses a social worker takes in their MSW program: advocacy, crisis intervention, legal and ethical aspects of client care; community resources; caring for families; benefits and entitlements; and health and disability.

The social work profession shares many priorities and ideals with the field of Aging Life Care. Here are just a few:

We take the “person in environment” approach.
One of the guiding principles in social work is that individuals are affected by their environment. We all exist in context. Why is it important for Aging Life Care Professionals to have this lens when working therapeutically with clients? As the ALCA Standards of Practice indicate, clients are part of complex systems and their needs must be considered in the context of their relationships. This includes relationships with family members, families of choice, healthcare providers, and larger systems like the Veterans’ Administration and the Social Security Administration.

We start where the client is.
A basic tenent of social work is that we must always “meet” the client where they are. This may seem obvious, but not all helpers take this approach. For example, we may have a list of “to do’s” in our minds when we meet a new client based on what we hear in the initial phone call, but in order to build rapport and trust with a client, and ultimately to best serve them, we need to start with their priorities and their goals. This shows our respect for them as individuals and prevents us from assuming that our priorities are also theirs.

Advocacy is at the heart of what we do.
Frequently the reason that a person or family is not thriving is because they don’t know how to access the services they need. Whether the need is healthcare coverage, disability benefits, or family caregiver training, social workers and Aging Life Care Professionals are committed to helping clients understand their options and advocate for themselves. If they are unable to do so, for example, due to health or mental health issues, we can be the ones to rattle the necessary cages to get things done.

I have great love for both social work and Aging Life Care. I often wonder, will the next generation also love this type of work? It is well documented that right now, our growing aging population does not have enough social workers and other healthcare providers trained in geriatrics to meet its needs. Our company in San Diego has been a fieldwork site for masters’ level social work students since 2015. We do this to encourage people starting their careers to consider working with older adults professionally. If we can train more social workers to be Aging Life Care Professionals, with all of the wonderful overlap that exists between these two professions, we will all reap the benefits.

You can locate an Aging Life Care Professional in your area by visiting the ALCA website at www.aginglifecare.org. The “Aging Life Care Expert” search feature allows you to enter your zip code or city to find a local professional who can help.

About the Author: Susan Valoff, LCSW, C-ASWCM, CDP, is a member of the ALCA Professional Development Committee and Vice President of Windward Life Care, a company providing Aging Life Care Management, in-home care, and home health services in San Diego, California. Susan is a proud graduate of the University of Chicago School of Social Service Administration. Go Maroons!

Financially Helping Clients Fund Their Care Needs: Real Life Examples

financially helping clientsAging Life Care Professionals(r) are called upon to assist clients with resources to handle their particular situations, including evaluating the financial resources necessary to help clients ensure quality care and an optimal life.  Did you know that 500,000 seniors a year will walk away from their life insurance policies?  This happens because they no longer want the policy, need the policy or can afford the policy any longer.  The reason a policy was purchased 10, 20 or even 30 years ago is no longer a concern.  The house is paid off, perhaps a spouse has passed away, the kids are grown and have their own lives, etc.  They do not know there is another option that can have dramatic impact on the ability of people to pay for their care needs.

A life insurance settlement is that option, and is the ability for a client to sell their unwanted/unneeded life insurance policy for cash.  The investor groups who purchase these policies become the new owner, pay the premiums, and become the beneficiary.  The client receives cash today, and the buyer receives an investment with a future return.  The amount a policy could we worth is very specific to each client, but policies can be worth tens of thousands or hundreds of thousands of dollars…all from an asset a client was going to walk away from.  All different types of policies can be sold, including term policies.

Here are some real-life stories of some of our clients whose lives were changed through a life insurance settlement:

*A healthy 88-year-old gentleman needed to find money to continue to pay for his wife’s home care needs.  He had several life insurance policies.  He sold his $114,000 policy for $26,000, giving him the resources he needed to continue the care for his wife.

*A 66-year-old gentleman with liver issues had a term life insurance policy that was reaching the end of its term.  He purchased it for his wife to pay off the house if something happened to him.  The house is paid off, and he was not going to continue the policy.  He sold the policy for $75,000.  This was “found money” for him, as he was going to walk away from the policy with nothing, and was a game-changer, to help make his life more comfortable.

These are just some examples of clients who were able to repurpose an asset they didn’t know they had, into cash to use to take care of themselves and their families.   We are life insurance settlement brokers and are here to support Aging Life Care managers, and their clients.  Having access to many investor groups, as brokers, our role and passion is to represent our clients to obtain the highest amount for their policy possible.

If you know anyone who is thinking of lapsing, surrendering, or walking away from their policy, please contact us first so they can find out if a life insurance settlement may work for them.  There is no up-front cost to find out how much a buyer may be willing to pay.  Contact us – we’re here to help.

About the Author: Lisa Rehburg is President of Rehburg Life Insurance Settlements, a life insurance settlements broker, and a Bronze-level Corporate Partner for ALCA. Lisa has been in the health and life insurance industries for over 30 years. She has held executive roles at carriers, general agencies and TPAs. Ms. Rehburg is energized by helping care professionals and their clients benefit from unwanted or unneeded life insurance policies. By having access to many investor groups, Rehburg Life Insurance Settlements can place more policies and realize a better return for clients. She holds a Bachelor of Arts degree in Finance and a Master of Arts degree in Organizational Development. She can be reached at (714) 349-7981, lrehburg@aol.com or www.rehburglifesettlements.com.

On Dementia: Care, Community and Creativity

Conversations of hope, joy, and better ways to care for and support individuals living with dementia and their care partners

More than 5 million Americans live with Alzheimer’s disease and over 15 million family members, friends and volunteers serve as care partners, according to the Alzheimer’s Association. Individuals with Alzheimer’s and other dementias do not stop living because of a diagnosis. They are still people—needing and deserving joy, engagement, community, and purpose. Their care partners also benefit from support.

So, how can others help to make an impact, address stigma, and enable people living with dementia to become integral parts of their communities and create opportunities for inclusion?

This spring, the Frye Art Museum Creative Aging Program, Aging Wisdom, and the University of Washington Memory and Brain Wellness Center are collaborating on a three-part series of enriching conversations with pioneers in dementia care, support, community building, creative engagement, and artistic exploration.

Each dementia care expert is also an author of engaging books that challenge, even disrupt, our assumptions about dementia, providing new perspectives and a deeper understanding of care, community, and creativity. Their books also offer practical suggestions on how to implement what they have put into evidence-based practice in support of individuals living with dementia, their care partners, and those who support them.

Author discussions will be offered as virtual programs through Zoom. The series is listed below. Pre-registration is required. There is no fee. To register, visit the Frye Art Museum at https://fryemuseum.org/program/creative_aging_workshops

  • Each program is scheduled on a Thursday at 12 noon Pacific Time.

March 11, 2021: Lynn Casteel Harper, On Vanishing: Mortality, Dementia, and What It Means to Disappear

Lynn Casteel Harper will expand our understanding of dementia beyond the typical fear-driven and tragedy narrative, On Vanishing provides encouragement and meaningful examples of better ways of caring for, and thinking about, our fellow beings.

April 8, 2021: Susan H. McFadden, Dementia-Friendly Communities: Why We Need Them and How We Can Create Them

Susan H. McFadden, PhD will discuss how intentional, thoughtfully engaged dementia-friendly communities can give people with dementia the opportunity to continue living with purpose, reciprocal personal relationships, and enrichment.

May 13, 2021: Anne Basting, Creative Care: A Revolutionary Approach to Dementia and Elder Care

Anne Basting, PhD is a MacArthur Genius Grant recipient who pioneers a radical change in how we interact with people who struggle with dementia. Basting’s proven methods use storytelling and active listening to stimulate the brain and awaken imagination.

About the Author: Keri Pollock directs marketing and communications for Aging Wisdom, an Aging Life Care practice based in Seattle, WA. She serves on the Frye Art Museum’s Creative Aging Advisory Committee as well as the Aging Life Care Association’s PR Committee.

Black and Brown Aging Life Care Managers® Changing The World, One Client at a Time

For over 400 years, black and brown communities have experienced systemic racism and intergenerational trauma (Gibbs et al., 2020). In 2020 and 2021, we continued to experience these traumatizing events portrayed through violence, dehumanization, and oppression. The disparities among black and brown communities have been marginalized and minimized by many for so long that some have given up hope and no longer recognize “I have a Dream.” As a result, historically, black and brown people learned to trust only within their circles and question all others’ motives. Because of this inner-circle trust level and distrust of others, black and brown individuals continue to suffer. We unconsciously deprive ourselves of a level of resilience. We mistrust the system, so we do not seek appropriate help or support from experts, such as mental health counselors and professional care managers.

As a Black Aging Life Care Manager® and Psychotherapist, it is my responsibility to foster resilience and hope for change again. While on the cusp of this change, it is essential to help my colleagues better understand why many black and brown individuals are resistant to hiring a care manager or seeking mental health support. The list below is not inclusive.

    1. Lack of understanding of the culture and environment: Historically, black and brown families developed inter-family systems where family members take turns caring for their elder loved ones. For example, as a kid (age 12), my siblings and I had to learn how to feed my grandmother through a feeding tube. During this time, you used a syringe to push the pureed food through the tube. Sending my grandmother to a nursing home was not an option. Also-just because there is a health care surrogate (HCS) or power of attorney (POA), that does not always mean that people always make independent decisions. Often, there are conversations between family members before the POA or HCS makes a decision.
    2. Fear and distrust: Fear and distrust of “the system” creates barriers for black and brown families to engage an outside expert (care manager or mental health therapist) to assist with their elder family member’s needs. Many do not see it as a value and will not invest in services. As a care manager, you must work closely with family members and the elders to gain their trust and dispel their perception. For example, do not pretend or say you understand their challenges without exploring their experiences (such as with medical providers, mental health therapists, or insurance case managers). Remind black or brown clients that they are the expert of themselves and that you view the relationship as a partnership.
    3. Miseducated or uneducated: Many individuals are miseducated or uneducated about their medical insurance benefits. As an experienced Medical Social Worker, I worked in the hospital for over ten years and encountered many patients who were informed by a neighbor or another family member that their insurance covers custodial care needs or that their medical insurance benefits include a care manager. Educating individuals about the differences in services is essential. Keep in mind, you must spell out the word V-A-L-U-E as a conversation. Increase their knowledge of Viable options; Advocacy; giving meaning to their quality of Life; Understanding their differences and how they view the world, and showing how much more Effective and Efficient actions are taken when an experienced Aging Life Care Manager is involved.
    4. Value of spending money on care management services: When you compare the socioeconomics between black and brown families and their counterparts, black and brown families have an extensive history of poverty and often limited access to financial resources. It is not that black and brown families do not value money or other financial resources; they usually do not see the value of spending money on care managers’ services.
    5. Lack of self-reflection and acknowledging your “stuff”: Many of us are comfortable in our role as a care manager, which can be somewhat dangerous when engaging black and brown elders and their family members. Words or phrases we use; or our body language can be offensive. Phrases like “when you people,” “my black friend,” or “I had a black supervisor that was great,” or “these people are nice” are not productive or effective rapport builder conversations. Before you take a referral or engage in discussion with black or brown families, dispel all your assumptions and cancel judgment.


V- to increase Viable options that family members may not be aware of. (As a care manager, our role is to ensure our clients know they have viable options and that the one a medical provider suggested it just only one).

A-show how your experience will help Advocate for them. Even as we get older it takes a village to care for someone. As a care manager, we aid in advocating for clients and family members. No person should ever feel like he or she is in this alone.

L-giving meaning to the quality of Life is important. As a care manager, our role is to be honest and meet the family and clients where they are. Explore what quality of Life looks like to them because changing their diet is not a measure of their quality of life.

U- showing your client that you want to Understand their differences and how they see the world is a great way to start a partnership.  For example, explore whether your black or brown client prefers to have medical providers that look like them or if that is not an issue.

E-emphasizing and showing how much more Effective and Efficient actions are when an experienced Aging Life Care Manager is involved.


About the Author: Kizzy Chambers MSW, LCSW, CMC, is an Advanced Professional Member with the Aging Life Care Association®. Chambers is deeply involved in both national ALCA committee work serving on the Diversity & Inclusion Task Force and regionally as a Board Member for the ALCA Florida Chapter and the Florida Chapter Professional Development Committee. Chambers is in her fifth year of providing Aging Life Care™ management services and is the Founder of RR Care Management, LLC in Orlando, Florida. She is a Professional Aging Life Care Manager® and a Licensed Clinical Social Worker with much of her experience as a Medical Social Worker. You can contact Chambers via her website at www.rrcaremanagement.com.


Sex, Money, & Your Parents: Conversations you never wanted to have

Annie and her two siblings have been helping their elderly parents in a growing number of ways over the past several years. Assisting with the care and upkeep of the family home, making needed grocery runs, preparing meals, attending occasional medical appointments, and in general — ensuring things are going OK.  Their mom was diagnosed with MCI (Mild Cognitive Impairment) or early stages of Alzheimer’s about a year ago and their dad has had several heart-related issues over the years but remains strong, active, and on “top of his game” as he likes to say.

Annie and one of her brothers are willing and continue to step in and help in a variety of ways. The real challenge now is planning and preparing for the future. The reality of their parents’ changing needs is becoming clearer. Annie and her brother realize they do not have a clear understanding of their parents’ finances. Their dad retired from a long successful career with NASA and always talked about the importance of saving for retirement. As far as Annie and her brothers are concerned, money never seemed to be an issue, nor was it talked about. Their parents always seemed comfortable. They have a nice, modest home, sent two of three children to college, drove nice cars, went on the occasional vacation, and as far as Annie and her brother knew they seemed to be financially secure.

The challenge now is talking to their parents about the future including their finances.  Just as Annie and her brothers never wanted to talk to their parents about sex when they were growing up, their parents do not want to talk to them about finances. Both can be uncomfortable conversations to have, but it is important to understand the need to have such conversations, and the potential outcomes if they are ignored.

Just as Annie and her brother work toward understanding their parents’ finances, many adult children with aging parents are challenged to recognize the importance of the topic.  Being prepared will allow families the ability to assist with realistic future financial costs and the ability to readily step in should there be a potential emergency.

Why is this topic so difficult to talk about? 

  • Generational – certain age groups kept personal matters such as money private. It was considered good, respectful manners to keep personal information private.
  • Shame, guilt – parents may feel embarrassed about their finances. They did not budget, plan, and/or save.
  • Fear – the fear of running out of money. Having to depend on, or be a burden to, their children.
  • Once a parent always a parent – parents want to stay in control – after all, they are the parent. They watched us succeed and fail many times, and they witnessed all kinds of mistakes along the way. They are not going to sit by and watch us make mistakes with their money.
  • Mortality – The reality of nearing the end of life.
  • Scams – potential scams both from within and outside of the family.

Strategies and tips to help begin the money conversation:  

  • Accept and acknowledge the conversation may be uncomfortable.
  • Share a story of a friend/colleague who had no idea about their parents’ financial situation and the difficulties this created.
  • Timing – be conscious of when, who, and where. Do not rush; there will likely be many small conversations, each one allowing both you and the parent to get comfortable with sharing information. (A holiday meal may not be the best time.)
  • Respect – avoid criticizing your parents’ record keeping and/or explanations of their choices. Remember they have been managing things their entire life, including raising you.
  • Do not go at it alone – recognize your own skillset and the value of working with professionals.

A CFP (Certified Financial Professional), Elder Law Attorney, or Certified Aging Life Care Professional may be valuable expert resources for their helping maximize their financial futures.

Many of us did a good job avoiding our parents’ unsolicited, awkward conversations about the birds and the bees when we were growing up, but we should not avoid the tough money conversations with them now.

  • Jennifer Beach wrote this article for the December blog post for Northeast Ohio Boomer and Beyond.

About the Author:  Jennifer Beach, LSW, MA, C-SWCM established Advocate for Elders in Rocky River in 2010. Jennifer has 25 years of experience in working with and advocating for older adults and their families. Jennifer is a licensed, insured Social Worker and an Advanced Aging Life Care® Professional. She has served as the Midwest Chapter President of the Aging Life Care Association and additionally served 7 years on the Board of Directors. In 2018, Jennifer was honored as the recipient of the ALCA Midwest Chapter Outstanding Member of the Year Award. Learn more at advocate4elders.com.

Jennifer is also a monthly contributor and author of Caregiver Corner for Northeast Ohio Boomer and Beyond blog and magazine.

 

A Portable Living Solution & Protection – For The Ones You Love

 

Bob and his father, John, in front of the newly delivered Wheel Pad! Brattleboro, VT

What does a family do about an aging parent who lives far away on his own? This dilemma faced Bob and his wife Jennifer Jacobs. Bob’s father, John, had always been independent. Once a professor of Histology at the University of Illinois at Chicago’s dental school, John, now 87, was living on his own in Chicago. Bob, a busy tree arborist from Brattleboro, Vermont, found himself flying to Chicago frequently to check up on his father. 

When a friend called to say John had fallen and was in the hospital, and after another trip to Chicago to see his father out of the hospital and into a rehabilitation facility, Bob knew that his father needed to be closer by.  With some planning, the rehab facility in Chicago released John to a rehab facility in Brattleboro. Because John was not yet ready for a nursing home, Bob looked at assisted living facilities in the area. John, however, was using a catheter, and assisted living places would not take him. With no place to go and no apparent options, John remained in what was meant to be temporary rehab. Adding to the dilemma the family faced, the coronavirus pandemic was starting to take hold in early March 2020; a rehab center was no place for an aging parent to be. Although John sometimes used a walker, he was increasingly reliant on his wheelchair for mobility. Bob and Jennifer’s home lacked space for another, nor was it wheelchair accessible. They were at a crossroads. 

While worrying about how they could possibly navigate having John live with them, Jennifer had an idea. She had been involved in organizing a Tiny House Festival in Brattleboro, where she met Julie Lineberger, the owner of Wheel Pad, the most unusual house on display at the festival. It was not an ordinary tiny house, it was a wheelchair accessible module that could attach to Bob and Jennifer’s home via a connector! It seemed to be the perfect solution to freeing John from the rehab limbo he was in. Jennifer’s plan was confirmed when she called Julie. After a bit of advance sitework, installation took place over a weekend.

As a regular process for all of our clients, Wheel Pad creates a rendering of what your home will look like after installation. Here’s an example of what we showed Jennifer, Bob, and John.

Far left, John’s grandson with his dog, Olive. Behind them, the family who previously leased this Wheel Pad. Sean suffered a Traumatic Brain Injury as a result of a motorcycle accident. The family insisted on helping to deliver and install the unit for Bob, John, and Jennifer. 

John has been living in his Wheel Pad for a couple of months now, and he expressed the wonderfully positive impact it has had. He feels like a part of the family, yet has his own private space with control over his climate. When he sometimes feels colder than other family members, he can go off into his own domain and turn up the heat. John noted how well-designed the unit is. His one suggestion was to move the heater controls from the floor to a spot more easily reachable from a wheelchair. 

 

The view from Wheel Pad into the main house via a connector.

 

 

 

 

 

 

It turns out, John is leasing an early model Wheel Pad, and all current Wheel Pads have heating controls at wheelchair height! He can easily transfer himself to the bed and the bathroom and down the ramp to get outside. He gets the benefits of rehab with a visiting nurse and physical therapist who come and work with him in the privacy of his own space without entering his son’s home and disrupting the family. The visiting nurse has been most impressed with John’s Wheel Pad and reflected that it could help many others in his situation. 

The fully installed Wheel Pad connector as seen from the outside.

Bob and Jennifer now breathe a collective sigh of relief at having Dad at home with them and safe from the ravages of the pandemic. They take meals together, enjoying both social time and privacy. John manages many of his own needs such as organizing and taking his medications, and, when he feels like it, he can still beat anyone at Scrabble!  

 

John in his new Wheel Pad!

 

 

 

 

 

With the help of Wheel Pad, John, Bob, and Jennifer are all partners in navigating this stage of John’s life with dignity, as much independence as is safe, with the security of family nearby. . . a gift for all!

About the Author: RJ Adler is the Business Development Director at Wheel Pad. Based in Vermont, he likes market-based solutions and building businesses. He spent his early career as a teacher, then switched to the solar energy industry, before moving into housing. He finds that the issues creating the energy and climate crises are similar to those facing the housing shortage, and they are fun problems to solve. Most often you’ll find him skiing, in a canoe, or dreaming about tinkering around the house. He’s always happy to have a conversation at rj@wheelpad.com.