Having the “Care is Needed” Conversation

July 1, 2013 at 6:23 PM

One of the most difficult and anxiety provoking aspects of caring for an elderly loved one is the initial conversation about whether they need care.  These conversations are so difficult because emotions and passions are involved as well as traditional familial roles and history.  Normally, the caregiver is concerned about their parent’s health and well-being while the parents (care recipients) are concerned about maintaining their independence and dignity.  Given this dynamic, the conversations can become emotionally charged and difficult.

The “Care-giving” conversation with our elderly loved ones is always difficult and because of that difficulty we tend to put it off until a crisis occurs and we are forced to confront it head on. In most cases we don’t think about what additional care our parents will need until we absolutely must.  But, avoidance is no defense. As former first lady Rosalyn Carter once said, “there are only four kinds of people in this world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.”  Nearly all of us will have to deal with “care-giving” for ourselves our parents, relatives, friends, or neighbors.

Most people don’t like to admit when they need help and this situation is only exacerbated because the intended care recipient also sees the need for assistance as yet another tacit reminder of their own mortality.  Convincing the elderly to first acknowledge the need for help; and then second engage in a conversation on the topic can be very difficult and frustrating.  To put this in context, many people who’ve had conversations both with their kids regarding sex/drugs/alcohol, and their parents regarding the need for “care” have said that the conversations with the parents were far more difficult and stressful.  Maybe worst of all, this is likely only the first in a series of difficult discussions that will take place as your loved ones age.

Sign Up for E-News

Given the difficulties and emotional sensitivities, most people put off these discussions until a crisis mandates them.  Sometimes, the catalyst is a major medical crisis (heart attack, stroke, severe fall, etc.); other times, it is something more subtle (noticeable loss of memory, change in temperament, or excessive amounts of laundry or bills piling up).  While these examples may not be conclusive, they are warning signs that help/care may be needed.   If people ignore the warning signs until a crisis necessitates that they get help frequently a less than optimal decision is made because they are reacting to the situation and struggling to find a workable solution to the immediate problem.

Communication styles brought on by generational differences can lead to another potential source of conflict.  For example, the younger generation – possibly due to excessive “over-scheduling” – wants to “get right to the point” and tackle the issue head-on, while their elders want to talk and reminisce about the old days and any other topic that comes to mind.  For the younger person trying to help, this can be extremely frustrating and confusing (side note: this communication disconnect can sometimes lead to the erroneous belief that the elderly person is experiencing some form of cognitive decline.)   When engaging in these conversations each side must make significant efforts to understand the perspective of the other person.

Given the difficulties inherent in these conversations and because of differing communication styles, here are a few suggestions to help move the conversation forward:

1) Go into the conversations with a lot of patience – some things can not be rushed.

2) Ask open ended questions (as distinguished from making statements).

3) Be careful of your word choice and tone, an elder may focus on the word choice or tone as a diversion to avoid focusing on the main issue of whether they require assistance with routine daily activities.

4) You have your perspective and they have theirs; understand that while you may be  speaking about the same circumstance or event you may see things very differently.  In this case it is not who is wrong or right, the important thing is to respect each other’s positions. Come together and find an acceptable solution for everyone involved.

5) Understand there may be generational role expectations that impede your progress.  For example, while you are pressing your parent because you love/care for them and are concerned about their well being, they (because they’re from the “strong/silent” generation where people don’t publicly discuss their problems ) may tell you the questions you are asking are “none of your business”.  Don’t let this deter you.  Find a way to speak to them such that you illicit the information you need while allowing them to preserve their dignity.

Having these conversations with your loved ones, while extremely difficult, may also be extremely rewarding.  You as the caregiver will feel good that you are able to help loved one and repay the good care that they provided you as a child.  Even if they never say it (remember, they are the strong/silent generation), they will appreciate it and love you all the more for it.  Good luck.

Derrick Y. McDaniel is the Managing Director of Caring Hearts of New Jersey Home Care, located at 4 South Orange Ave., #302, South Orange, NJ 07079. Phone – 973-532-2713.  www.caringheartsnj.com

As Holidays Approach, Care Giving Remains a Family Affair

November 6, 2014 at 5:11 PM

Caregiving is not usually something that a person does in isolation. In some cases a person is forced to do it without help from others, but that is usually not as effective and is almost never by choice. There is just too much to do. Usually other family members are involved or some assistance is obtained from public or professional resources.

Reliance on family can be good or bad depending upon your perspective and family dynamics. Several studies have found that one of the most stressful aspects of caring for an aging loved one is the interaction between siblings and other family members. When addressing the caregiving needs of your parents, there will likely be increased, and in some cases forced, interaction with siblings. It doesn’t always have to be that way. There are tools and techniques that might help you avoid some of the stress that can be associated with caregiving and the interaction with siblings (and other family members).

While every person has his or her own perspective on the events, you are all watching the same scenario. Perhaps you are all watching your father suffer the horrible effects of Alzheimer’s. He seems to be slowly slipping away right before your eyes. He is one of the people that helped take care of you and was a large part of the foundation of your reality—now he can’t take care of himself. This is usually traumatic on multiple levels for most people. The whole family is watching him decline, becoming more dependent, and struggle. As he becomes less caregiver and more care recipient, there is a shifting of roles. This will necessarily cause a shift in family structure. The shift may be difficult and emotionally unsettling. It may also release long-held feelings and tensions as the entire family struggles to adjust. Each one will navigate this emotional journey differently, and each sibling will not be in the same emotional place at the same time. You will have to be understanding and help each other get on the same page. The toughest part may be recognizing that he is not only your father, but he is also father to all of your siblings.

Sign Up for E-News

Even though you have the same parents and grew up in the same household, each of you has a different relationship with your parents. Expecting siblings to see, react, and respond in the same way to the parent that you know will likely lead to misunderstandings and heartache. When interacting with siblings, one of the more helpful things to do—for them and for yourself—is to take a step back and imagine their reality. This is more than just understanding their relationship with your father. It might mean understanding what is going on in their lives right now. What emotional triggers live beneath their reactions? How must they be feeling? If you were in their shoes, how would you react? Where are they coming from?

When you begins asking and answering these questions, you will find your relationships with siblings (and other relatives) improving and you are better able to focus on the main issue – providing the best possible care to your loved one.  Good luck on your caregiving journey.

Derrick McDaniel is the Managing Director of Caring Hearts of New Jersey Home Care in South Orange.

Derrick Y. McDaniel

DERRICK Y. McDANIEL (“Mr. Eldercare 101”)
4 South Orange Ave. Office: 973-532-2713 x 706
South Orange, NJ 07079 e-mail: derrick@MrEldercare101.com

Derrick McDaniel works with caregivers to help them provide the best care possible to their loved ones while simultaneously caring for themselves, their finances, and their careers.

He is a recognized expert in the field of Eldercare, a Principal and Managing Director at S.E. & D. Enterprises (dba Caring Hearts of New Jersey Home Care, Caring Hearts NYC Adult Daycare Centers), a privately owned and managed company focusing on the Senior Care industry, an eldercare advocate, senior care consultant, host of the Mr. Eldercare101 podcast and video series and the author of a critically acclaimed new book entitled: Eldercare, The Essential Guide To Caring For Your Loved One And Yourself. http://bit.ly/EldercareGuideBook Two decades ago he entered the eldercare industry as a client. As the primary caregiver to his grandmother his initial industry experiences were as a care provider to an aging loved one. His experience as a caregiver continues to influence his outlooks as he frequently writes and speaks from a “caregiver-centric” perspective.
Mr. McDaniel’s current professional responsibilities include day-to-day operations management for Caring Hearts of NJ & NYC, and Consulting to private clients. He is also a regular lecturer and frequent contributor of eldercare related articles to international magazines and online publications. Over the past 15 years he has counseled hundreds of families both formally and informally.

Book Review – Positive Community Magazine – http://bit.ly/1SJi8bC

On-Air Interviews:
Recent On Camera Appearances:
WABC-TV – “Here And Now” – http://bit.ly/WABC-TV-DerrickMcDaniel
The Root Live – Harriet Cole –
http://bit.ly/DerrickMcDaniel-MrEldercare101-TheRootLive-PrudentialSeries

Magazines/Articles/Features – National/International:
Ebony Magazine (Multiple Articles)
http://bit.ly/DerrickMcDaniel-Eldercare-EBONYMagazine
Black Doctors (Multiple Articles)
http://bit.ly/DerrickMcDaniel-Eldercare-BlackDoctors
Real Health Magazine
http://bit.ly/DerrickMcDaniel-MrEldercare101-RealHealthMag
Target Market News – http://targetmarketnews.com/storyid07021501.htm

Additional

Reuters
http://bit.ly/DerrickMcDaniel-MrEldercare101-Reuters
As Holidays Approach Caregiving Remains A Family Affair
http://bit.ly/DerrickMcDaniel-MrEldercare101-HolidayCaregivingRemainsAFamilyAffair
Having The Care Is Needed Conversation
http://bit.ly/DerrickMcDaniel-MrEldercare101-HavingTheCareIsNeededConversation
Caring For Your Elderly Loved One And The Satisfaction It Brings
http://bit.ly/DerrickMcDaniel-MrEldercare101-TheSatisfactionCareGivingBrings
Retirement Income Journal
http://bit.ly/DerrickMcDaniel-MrEldercare101-RetirementIncomeJournal

National Syndicated Radio
Sirius Radio Network – http://bit.ly/Sirius-DerrickMcDaniel-Karen-Hunter-Show
George Kilpatrick Show

Ash Cash Show
http://bit.ly/DerrickMcDaniel-MrEldercare101-AshCashShow1
Café Mocha – WBLS-National
NAACP Network – WTHE- National
Radio Stations Additional Markets
New York | Washington DC | Atlanta | Miami | Chicago | St. Louis | Houston
Dallas | Los Angeles | Oakland | Seattle
Mr. Eldercare 101 Podcast
Mr. Eldercare 101 – Podcast #2 – Long Term Care Insurance
http://bit.ly/MrEldercare101-LongTermCareInsurance

Who Cares?

Some people will become caregivers gradually which can begin by running errands or accompanying a parent to doctor’s appointments. Most will become caregivers as a result of a crisis situation (heart attack, stroke, severe fall, etc.). The better informed you are, the better you will care for your loved one and yourself.

Being a caregiver will undoubtedly present challenges, but it will also present wonderful opportunities to connect with your loved one. I’ve been associated with the eldercare industry in one way or another for close to two decades. While I’ve heard many people complain about the challenges of being a caregiver (myself included), I’ve never heard anyone in retrospect say that they regretted doing it.

Who usually becomes a caregiver  
In most cases, the caregiver role is assumed by women—a female spouse, a daughter (the likeliest, by a wide margin), a daughter-in-law, or a granddaughter. Generally speaking, women provide the vast majority of caregiving services. But that trend is changing. In recent years, men have begun to assume more of the caregiving duties. Women are still far more likely to be the caregivers within the family, but men now represent more than 34 percent of caregivers.

In 2012 AARP estimated there were 65.7 million caregivers make up 29 percent of the US adult population, and provide care to someone who is ill, disabled, or aged.  80 percent of the care provided to the elderly in the United States is still provided exclusively by family members.  The prototypical caregiver devotes an average of eighteen hours per week to caregiving over the course of about four and a half years.  The estimated annual value of this unpaid work is as high as $350 billion.

Time requirements
While there are many positives regarding caregiving there are also many challenges.  One of the biggest challenges is the time commitment.  The older the care recipient, the more time per week will be dedicated to caregiving tasks. On average, a person fifty-five to sixty-four years old will require 25.3 hours per week. This increases to 34.5 hours per week for someone over seventy-five years of age.

Cost of Care

Financial
The financial cost can be substantial.  The national average cost of a private nursing home room was $252 a day/$91,980 annually and has risen an average of 3.5 percent annually over the last several years; the average cost for a month in an assisted living facility was $3,496 a month/$41,952 annually and has risen an average 3.4 percent per year.  The average cost for a home health aide was $22 hourly/$41,184 annually and has risen an average 1.3 percent per year.

In addition to the cash outlay there is also the consideration of how much is lost by virtue of money not generated because you are caring for a loved one.  Ten million caregivers over age fifty who care for their parents lose an estimated $3 trillion in lost wages, pensions, retirement funds, and benefits. The total costs are higher for women who lose an estimated $324,044 because of caregiving, compared to men at $283,716.  Because many women have prioritized caregiving over work they suffer long-term consequences, resulting in lower wages, fewer benefits, and reduced retirement savings.  Years later, these women are at a 4.6 times higher risk of living in poverty.

Health
More important than the financial cost, are the cost associated with caregiver’s health and well-being.  Often when focusing on caring for parents, we forget that we must also care for ourselves.  Caregiving can be stressful and the associated stress can impact a caregiver’s health.

A 2009 study reported that caring for people with dementia impacts a person’s immune system for up to three years after their caregiving experience ends, thus increasing their chances of developing a chronic illness themselves.  Eleven percent of family caregivers report that caregiving has caused their physical health to deteriorate. In general, 17 percent of caregivers report that their health has gotten worse as a result of their caregiving responsibilities. Those who are more likely to rate the physical strain of caregiving as high are female (17 percent versus 10 percent males).

A separate but closely related illness frequently associated with caregiving is depression.  For some caregivers, emotional fallout from caring for an ailing parent goes beyond stress and into the realm of depression. According to a 2006 research study from the Family Caregiver Alliance, 40 to 70 percent of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression. This is particularly true for women, who are more prone to the illness, and for those who are caring for someone with dementia.  Remember, depression is a treatable illness. A proper diagnosis of depression and of the kind of depression you may be experiencing, is crucial in determining the best treatment program.

When caring for someone else you must also care for yourself.  Consider this analogy – when flight attendants go through the safety briefing before a plane takes off they tell you that in case of emergency, place the oxygen mask on yourself before you place it on someone else. The logic is simple—you can’t save someone else if you have passed out from oxygen deprivation.

How to care for yourself
Even though caring for yourself may seem like one more thing on an already overcrowded to-do list, it may become the single most important thing on that list.

Care for yourself and ask others for help when necessary.  Our generation cares for elderly parents differently than previous generations. We seek help from others and share our feelings, issues, and concerns.  We talk about personal matters that would have embarrassed our parents, and we are more likely to explore counseling or confide in friends. Our generation has matured with a different mind-set.  By asking for help, we are doing what is healthy and better positioning ourselves to be more effective caregivers.

Specifically regarding your stress levels, you may not be able to control life, but you can control how you react to it.  Train yourself to recognize thoughts and situations that will lead to stress.  Changing your reactions can do a lot to reduce your levels of anxiety. The first step is to listen to your body and learn to recognize the common symptoms of stress (ex: sadness, lethargy, insomnia etc.)
Again, you can’t take care of others if you have allowed yourself to become ill.

Conclusion
Caring for an aging parent or loved one brings a host of pressures to bear on your time, finances, emotions, and relationships. Most people do not understand and are not prepared for the unique requirements involved in caring for an aging loved one.
You won’t be the perfect caregiver. No one is.  You cannot fix every issue. You can’t cure your loved one’s illnesses. You won’t be able to change family member’s personalities, their apathy, or their assumptions. In reference to yourself, you may not be able to overcome some of your own issues and unresolved feelings. And that’s OK.  Just do what you can reasonably manage and accept that the rest of life, for better or worse, is going to happen. It is not your job to make everything perfect; it’s your job as a caregiver to do the best you can. Love the person you care for, and let them love you back.  Beyond that it is out of your hands.  Good luck on your caregiving journey.


Derrick McDaniel, JD, MBA, PMP is currently a principal and managing director at S.E. & D. Enterprises, a privately owned and managed company focusing on the senior care industry. Two decades ago he entered the eldercare industry as a client. As the primary caregiver to his grandmother, his initial industry experiences were as a care provider to an aging loved one. McDaniel’s current professional responsibilities include day-to-day operations management, staff management, client acquisitions and retention, marketing, business development, strategic alliances, and contract negotiations. During the past 15 years, he has counseled hundreds of families both formally and informally. He is also a regular lecturer and contributor of eldercare related articles to various publications.

STDS: A NEW REALITY FOR SENIORS

I met a gentleman at a social event recently who asked me what I did for a living.  A detailed and accurate answer would be: “I’m the author of a very well received book on Eldercare, a senior services business owner, and Eldercare expert who works with Caregivers to better care for their loved ones while taking care of themselves, their families and their careers.”   But, saying all of that sounds pompous (and simply takes too long).  So normally I just say, “I’m in the eldercare space.”

READ: Prevent Caregiver Burnout

Usually, the conversation goes one of two ways after that. Either the person immediately tells me about their personal eldercare challenges – which is a fairly common response since 1 in 3 U.S. adults is a caregiver to an elderly person – or, their eyes glaze over and they immediately change the topic. This time, I received a response that fit squarely into the first category.

The gentleman immediately started telling me about his favorite 86-year-old uncle who contracted anSTD while living in an Alabama nursing home. Evidently, he and his family had several theories about how he contracted the disease. His colorfully detailed, profanity laced retelling of all the theories were so funny I could barely bring myself to tell him that they were all likely wrong (or at least, not fully informed). Eventually, my professionalism overwhelmed my desire to keep laughing and I explained the realities of seniors and STDs.

STDs in the elderly on the rise

STD transmission among the elderly is, unfortunately, a common and growing problem. For example, between 2007 and 2011, chlamydia infections among Americans 65 and over increased by 31 percent, and syphilis by 52 percent.

READ: 10 Easiest States To Catch An STD

Most caregivers are surprised because they never imaged sexually transmitted diseases to be one of the many issues they could encounter when caring for an elderly loved one.  After hearing the bad news the caregiver’s first question is usually, “How did this happen?”?

The reality is your college-aged daughter on spring break and your grandmother in the nursing home should each be equally worried about catching chlamydia from the guy (or the grandfather) next door.

A more detailed examination of “why” runs the gamut from the simple to the complex:

  • Men using erectile dysfunction drugs engaging in sex with post-menopausal women (without fear of pregnancy) can increase unprotected risky sex
  • Significantly fewer older men are available, so women in an effort to please (and keep) a partner have risky unprotected sex
  • Older people are now using online dating and thus are relatively unfamiliar with their partners and their sexual histories
  • Many of today’s “Baby Boomers” came to maturity during the sexual revolution of the 1960s/1970s and are now reverting back to their previous risky sexual behavior
  • A lot of seniors were already married when sex education gained prominence and therefore missed the “safe sex” talks and never learned “safe sex etiquette”
  • As people age their immune systems tend to weaken making them more susceptible to contracting ANY disease – including STDs
  • Seniors, because of embarrassment, are less likely to discuss sexual issues with their doctors – which can further lead to the spread of STDs
  • Many doctors don’t think to test seniors for STDs as a standard examination protocol

Stopping the spread of STDS in the elderly

Individually or in combination, the reasons above can lead to the spread of STDs amongst seniors. In the short term, what’s more important than why STDs are spreading is what needs to be done to slow or stop the progression. Here are a few quick thoughts:

READ: HIV/AIDS: 6 Ways To Protect Yourself Beyond Condoms

  • Seniors should be getting the same basic “safe sex” education as young people (learning about STDs and how to recognize the signs, how they can complicate other existing chronic medical conditions, and most importantly the proper use of condoms)
  • Doctors should inquire about sexual activity with seniors as they do with teenagers and younger adults
  • Information on detection and treatment options need to be well publicized to aging populations (e.g., Medicare provides free STD screenings and low cost treatments)
  • Distribute free condoms in places where seniors live and congregate

Whatever the reason or the chosen solution, the critical first step is having a conversation with your loved one and educating them on the dangers of having unprotected sex.

 

Derrick Y. McDanielAfter years of consulting, providing professional advice and caring for the elderly, Derrick Y. McDaniel, a recognized expert in the eldercare industry, an attorney and former NYU professor, has composed a resource tool to help everyone who cares for their aging loved ones. Eldercare, The Essential Guide to Caring for Your Loved One and Yourself is a book that answers all the tough care giving questions that most people do not know to ask. Visit MrEldercare101.com for more information.

An Education in Eldercare: Understanding Caring for a Loved One

[ESSAY] Being thrust into the obligation of taking care of the elderly meant many changes, but it also taught many lessons along the way

My family expected my Mom to be the caregiver for my grandmother. In fact, she relocated to New York from South Carolina for that exact purpose.  But within six weeks of her move she died unexpectedly, meaning the mantle of caregiver then gradually passed to me.  I did not fit the profile of the typical caregiver.  I was a single male in my mid-thirties,  I had a six-figure salary working on Wall Street, I taughth business courses at New York University and sat on the boards of two charities.  I worked a lot, partied a lot, and hung out a lot.  Frankly life was good.

And then it changed but ultimately-over time-became even better.

My mother’s sudden death threw my life and entire family into chaos.  Soon after her burial the question arose of who would step in and fill the void of caregiver for my grandmother.

“Nana” and I were always very close.  Most Sunday afternoons I would show up at her apartment — where dinner was always waiting — eat, spend time with her and eventually fall asleep on her couch before rising late in the evening and driving back home.

But after mom died, the routine began to change.  My role as caregiver evolved gradually beginning with small tasks like driving her to the bank or doing the grocery shopping for the week “since I was coming over anyway.”  It didn’t occur to me that these request were more than just a matter of convenience.  When she asked for these “favors” she was actually saying these tasks were becoming too difficult and that she needed help.  Over time the request became more frequent and time consuming.

In addition to the other tasks I began accompanying her on trips to the doctor, making calls to insurance companies, scheduling appointments etc.  Fortunately, I had the type of job where I could arrive at the office late and/or leave early-so long as my productivity did not suffer.  There was never an official conversation where I was ordained with the title of “caregiver.”  I was just doing what was necessary for a loved one.

Eventually, because of the increasing time demands, I had to prioritize and make changes to my lifestyle.  This also happened gradually. First, I stopped hanging out and partying as much, next I resigned from the boards, and eventually stopped teaching at NYU.

I even bought a Brownstone in Brooklyn so she and I could live together (trying to save the commuting time between her apartment and mine).  At first, she was 100% in agreement with relocating and living with me-right up until the moment I bought the place.  After closing on it, she decided that she didn’t want to leave her friends and familiar surroundings. I almost lost my mind.  Believe it or not she got me like that two times.  I still live in the second house I bought so we could live together.

If only I knew then what years of industry experience has since taught me: Elderly people do not like to move.

Admittedly, there were times of stress and frustration like these but there were also many times where we would just talk and laugh.  I really enjoyed these times.  Eventually most of our conversations became things of substance.  I was dealing with serious matters and was being forced to mature because I now had responsibility to care for someone other than myself.

To be perfectly honest, at that point in my life, taking care of me was easy.  I was blessed to make plenty of money, I ate at whatever restaurant was interesting and convenient, I dropped of my clothes off at the dry cleaners, the cleaning lady cleaned my apartment etc.

My lifestyle was easy to manage because I did almost nothing for myself.  Caring for Nana was different.  She didn’t like restaurant food, insisted on doing her own laundry, and fired at least four cleaning ladies (that I paid for) because “they didn’t know how to clean.”  Collectively, managing her issues and tending to her needs made me mature, but the real benefit of being her caregiver was realizing how amazing she was.  For example, our conversations taught me more about people and the world than I could ever have imagined.

I was especially surprised by her insights regarding office politics-because she was never in corporate America.  When I would tell her events played out exactly as she predicted she would usually smile and say either “people are people” or “remember, I’ve already walked the path you are just starting to walk.”   Those points are particularly poigniant now in the nearly six years since Nana died. I have more formal education than any two people will ever need but I learned more about the world, business, people and myself in the years that I was her caregiver than I ever did in a classroom.

Caregiving will undoubtedly present challenges no matter how strong the bond between the caregiver and recipient, but it will also present wonderful opportunities to connect with your loved one.  Since this experience, I’ve been associated with the eldercare industry in one way or another for close to two decades.

Eldercare is a situation that will impact most, if not all of us, now or in the future. Recent national surveys indicate that 1 in 3 adults are currently caregivers to the elderly and 47% expect to do so at some point in their lifetimes. Some people will become caregivers gradually by running errands or “helping out,” but most will become caregivers as a result of a crisis situation (heart attack, stroke, severe fall etc.).  No matter your introduction there are many common truisms.  The most important of which is the better informed you are, the better you’ll care for your loved one and yourself.

Frankly, when most people (myself included) become caregivers they don’t understand and are not prepared for the unique requirements involved in caring for an aging loved one.  That’s okay.  There is no such thing as the “perfect caregiver”.  In fact, it is not your job to be perfect.  Just do what you can reasonably manage and accept that the rest of life, for better or worse, is going to happen. Love the person you care for, and let them love you back.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101

The Cost and Confusion of Caring for Our Elderly

Taking care of a family member in their senior years can come with a hefty price, but not having the proper resources makes it even more challenging
When

people are confronted with the challenges of caring for an elderly loved one, the single most common (and usually the first) question people ask is “what does eldercare cost?”

Great question.  Unfortunately for some folks, they don’t have access to the best sources of information and either spend more than they should or forego needed services because they think they can’t afford them.

My story is the perfect example of this.  When I became the caregiver to my grandmother I didn’t know anything about eldercare.  Like most people, I had a loved one that needed help and I started doing what needed to be done.  There wasn’t any rhyme, reason or planning involved.  I did the things that were necessary in the ways that made the most sense in the moment.  Also, like most caregivers, I was too busy with other things to really sit down, understand the industry and create a strategic action plan.

Without a plan, you do what you do and deal with problems if and when they happen.  Most people live their lives this way but this is absolutely the wrong way to approach caring for an aging loved one.  Remember the old saying: “what you don’t know won’t hurt you.” In eldercare, what you don’t know not only will hurt you, but can financially devastate you.

At first, my grandmother needed minimal assistance.  I did her grocery shopping, helped around the house, accompanied her to doctor’s visits etc.  As time progressed she needed someone who could be more available than my work schedule allowed so I hired a caregiver who could be there several hours a week.   I paid for the services out of my own pocket.

Several months after hiring the home care aid my grandmother was hospitalized for some minor issue.  While there, a social worker suggested I enroll her in the Medicaid program because Medicaid would pay for the home care service.  I figured all the years of taxes my grandmother paid would finally come back and provide a benefit to her when she needed it most.  Wonderful.  She would get the care that she needed and I could save my money.  Win-Win.

My excitement lasted about five minutes.  The social worker and I started filling out the forms and near the top was a question relating to my grandmother’s assets.  At that time, you could not have more than about $1500 in cash (recently raised to $2000).  Also, there was a five year “look back” period so if you moved money, your bank accounts could be audited for the previous five years.  In short, since my grandmother had more than $1500, Medicaid was not an option — or so I was told.  I was advised to spend down her savings and when it was less than $1500 come back and apply at that time.

This is the same advice that is literally given to thousands of people every day all over the country.  Thank God I didn’t listen to it.  When the lady gave me the threshold as $1500 I thought she misspoke.  When she repeated it, I thought she must be new to the job.  So, I found another hospital social worker and asked her.  She confirmed the number.   By this point, I was confident the hospital needed to better train their staff and I decided to speak with people elsewhere.  I was then referred to local “eldercare” attorneys.   They told me the same things.  During this period I spoke with no fewer than five social workers and four attorneys.  They all said the same things.  I refused to accept that threshold number was accurate or alternatively that there wasn’t some exception.

Finally, as a last desperate act, I decided to “upscale” my search for information.  I found one of the most expensive eldercare attorneys in New York City.  The consultation cost more than my living room set.  I explained the situation about the assets and what I wanted.  He said: “no problem.”  This was just what I wanted to hear.  But ever the skeptic, I asked him why he gave a different answer than the other people who were all 100% consistent.  He said because they were doing the equivalent of “going to the IRS and asking for tax planning advice.”  Essentially, they were quoting the rules but did not have the next level of information about how to LEGALLY navigate the rules and still get the services.

I now own a home care agency and I once ran the numbers, my grandmother received over $400,000 of market rate services.   Had I listened to the info from the social workers et al. I would have taken technically accurate advice that was none-the-less “bad advice.”  The tragedy of this all is that no one gave me bad information.

The social workers at the hospital gave me technically correct answers and I can’t fault them for what they said.  Unfortunately, over the last several years, I have seen far too many instances of people who received similar advice, relied upon it and squandered their loved one’s assets “spending down” to get under the threshold.

In one truly sad case, I sat next to a gentleman on a flight back from Europe.  Once he learned what I did for a living he told me the whole story of what he went through with his mother.  He and I were given essentially the same information the only difference was that he accepted it.  He told me that he and his sibling liquidated most of the assets his parents spent a lifetime building.   By the time we landed I was absolutely certain that his mother died prematurely from a broken heart.

So there are two lessons here: First, When it comes to eldercare, the information you don’t have can very seriously hurt you in terms of quality of caregiving services and financially; and  secondly always try to find the very best people accessible to you. Don’t be afraid to ask them questions-even if you think you already know the answers.  This is especially true if someone has already told you something can’t be done.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.

Family Fracas: When Taking Care of a Parent Causes Grief Between Siblings

The care of an elderly mother or father can create divisions between relatives, but if everyone is willing to listen to each other, lots of drama can be avoided

The widowed matriarch of the Carter* family, who suffered a stroke in early 2015, now requires a significant amount of care.  In consulting with them, I found them discussing the “pros” and “cons” of various long-term care options.  Immediately, it became obvious that the “real” issue wasn’t lack of information but family history and dynamics.  The siblings, all good and well-intentioned people, were not able agree on much of anything and therefore weren’t moving forward.

They were too busy arguing and resenting each other to come to consensus regarding their mom’s care.  As a result decisions were either delayed or not made.  Essentially, their mother’s care become hostage to their sibling drama.   Normally in situations like this it’s not about “good” or “bad” people-it’s usually more about perspective.

There are two sons and an older daughter (from their mother’s first marriage).  They all love and care for their mom — who has some assets but is not wealthy.  Unfortunately, their mom never communicated (either verbally or in writing) what type of care she would want if she were ever not able to communicate for herself.

This is where the arguments began.

Eric, the middle child, lives in New Jersey — five minutes from mom’s house.  He works on weekends but has the flexibility to go back and forth.  Karl, the youngest child, is a single professional and lives in New York and is just starting his career.  Bobbi, is the oldest sibling but lives in another state with her family.  Again, all three very much care for their mother but have slightly different relationships with her and very different perspectives based upon what’s going on in their own lives.

In eldercare it’s typical for 95% of the caregiving efforts to be provided by one person. Eric, because of close physical proximity had traditionally been responsible for mom but since the stroke has become overwhelmed and resentful of his siblings’ lack of assistance.

Karl is focused on his career and works long hours. This creates tension between the two brothers because Eric feels that Karl should dedicate more time to helping with mom.  Karl tries to visit/help on weekends but lives an hour away, often works at least one day on the weekend, and doesn’t fully appreciate Eric’s workload. The way he sees it, Eric lives five minutes away and only has a part-time job and consequently can easily be available when their mother needs something.

Then factor in Bobbi, the eldest, who only sees their mom about once a year.  Because she’s the oldest by several years, growing up she was often left “in charge.”  Now, years later, she still believes that her brothers should listen to her on important matters.  While they both respect and love their sister, both Eric and Karl feel that since Bobbi is not involved in the caregiving and only sees their mother once a year, she is too far removed from the situation to call the shots.  Again, each of the siblings loves the other, loves mom, and wants the best for her. Love is not the issue.  To avoid arguments they’d mostly stopped sharing their feelings and this allowed tensions to build.

Communication is usually the key minimizing or eliminating family issues.  First, a large part of the situation was caused by their mom never communicating what she wanted for her own care.  Then, each of the siblings had their opinions based at least partially on their individual situations.  Unfortunately, none of them realized or communicated that their own perspectives played a role in what they thought and how they viewed each other.

In the case of the brothers, while loving, they are very different –as evidenced by their life choices.  From childhood they saw the world differently.  Previously they agreed to disagree.  No big deal.  Now as they needed to care for their mother it became obvious that not only did they not agree with each other’s lifestyles, they didn’t respect the others choice about what was most important-work or family.  Bobbi had the least contact with mom because of geography (and some unresolved issues).  Since childhood she was accustomed to having the final word between the siblings; this was especially true on important matters.

Eldercare related matters can often be stressful and require dynamic decision making with incomplete information.  In times like these some individuals revert back into old patterns of behavior through habit.

After consulting with the family we were pretty quickly able to resolve their issues once they were identified.  Mostly it came down to frequent, clear, and honest communication with the focus always being on what care was best for mom.

So how did they solve a problem that has a tendency to break families apart and cause strained relationships and avoidable stress?

What it took was some really honest interaction between the siblings. After getting an understanding of their individual situations, they first agreed to do what was best for their mother and not most convenient for themselves.

They then instituted frequent conference calls so everyone had the same information at the same time and no one was ever excluded from a conversation. They also began sharing tasks based upon ability to resolve the issue.

For example, Karl now handles anything having to do with insurance, or paperwork, etc., and comes over at least two weekends per month; Bobbi handles most things that can be done via phone or internet like orders groceries, pays bills, schedules appointments; meanwhile Eric still handles most of the day-to-day tasks but now has significantly more time because his siblings are now actively involved.

Opening the lines of communication and getting everyone actively involved reduced tensions, made everyone feel like they were contributing, and helped each sibling develop an appreciation for the other’s perspective.   As result the siblings are becoming even closer while bonding over mom’s care.   Additionally, mom now has three caregivers focused on making sure she receives all the care and services she needs.

Relationships just are the way they are.  The simple truth is that some of these issues can be resolved and others can’t.  No matter which category you and your family fall into what’s most important is that the focus remain on getting and maintaining the best possible care for your loved one.

*Names have been changed for privacy purposes.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.

From Freedom to Dependency for the Elderly, the Difficult Family Talk

When parents are no longer able to take care of themselves, their relatives must make the decisions about their long termcare. But how do we approach these uneasy conversations?

Many

who spend time with elderly loved ones will notice that they are starting to decline and may need help around the house.  Some folks will be lucky and their loved one will ask for help and a difficult conversation will be avoided.  But the vast majority will not have it this easy.  They will have to struggle with the issue of how to approach mom or dad and have the “care is needed” conversation.

If you have elderly loved ones you have had this conversation or eventually will.  Right now almost one in three U.S. adults is a caregiver and 47% of adults surveyed expect to provide care to an elderly loved one at some point during their lives.  A lot of us will face this issue.  As caregivers we are concerned about our parents’ health and well-being while they are concerned about maintaining their independence and dignity.  It quickly becomes complicated because emotions are involved as well as traditional familial roles and history.  Too frequently, conversations are avoided for these same reasons-until a crisis occurs and people are forced to deal with the situation.

Having the initial conversation about whether help is necessary is usually one of the most difficult and anxiety provoking aspects of caring for an elderly loved one.  People who have had both the “sex” talk with their kids and the “care is needed” talk with their parents routinely say the latter is more difficult.  Getting a person who was once young, active, and independent to accept that those days are in the rearview mirror is difficult.

Here’s a typical example: something triggers a concern for mom’s wellbeing — laundry or mail piling up, her losing weight, difficulty with bathing, walking or standing etc. — then comes the task of getting her to recognize it and accept help.   You bring up the topic and she shuts you down.  At some point she reminds you that “she raised you”, or in many cases accusations start to fly like “you just want to control me.”   No matter how it unfolds the goal of the conversation is to reach agreement and get her the assistance she needs.   FYI, this is normally not a “one and done” conversation.  The conversations will likely happen in bits and pieces and take an extended period of time. Expect that most older adults will not easily accept that they now need help to safely make it through the day.  It’s normal for the initial conversations to be difficult and uncomfortable. Subsequent conversations might also be tense — but they are necessary.

The discussions will go better if they happen before a crisis forces everyone to make decisions on the fly. Without that pressure, family members can work to ensure that everyone’s fears and anxieties are addressed and that no one feels demeaned, diminished, or excluded.  Here are a few suggestions that may help you get started:

  • Take advantage of opportunities to initiate a conversation. If mom starts to mention that walking is getting more difficult and she’s having trouble standing for long periods of time, this may be your opportunity to start “the talk.” You may not get a perfect opportunity, so be open to “good-enough” opportunities
  • Misdirection is sometimes a way to start the conversation. Perhaps start talking about the father of someone you work with. Mention how a crisis situation occurred and the difficulties it caused for that elderly person and their family (but be sure not to imply he was a burden to his family). See where the conversation goes. It may open the door for you and your dad to have a productive discussion.
  • Be sensitive to your elderly parent’s position and remember when communicating there is a generational divide to consider.   Approach your parent and the conversation with an open mind. Listen to them so that you get a sense of where they are in the process, mentally and emotionally. You may also get lucky and find out that they have already begun to make preparations for themselves.
  • Try to keep it casual and focused. If they are resistant the conversation can quickly and easily refocus and shift to you, your relationship with them, or your role within the family.  The more intense the conversation, the more likely this will happen. Try not to let this become confrontational.
  • Remind them and yourself that the ultimate goal is to help them. This will become especially important if the conversation becomes heated or confrontational.
  • Tell them you love them and care about their well being and safety; then ask them how they are doing. Starting this way will likely open the door for conversation. If you see them becoming defensive, back off a little, but remember that they just gave you a clue as to how future conversations on this topic will likely go.

 

Regardless of the family’s culture or the difficulties, make it a point to have discussions with your elderly loved ones.  Also, be sure to have conversations with siblings to make sure there are no assumptions that will cause discord or hurt feelings. However you initiate the topic, try your best to keep the focus on your elders and their needs. Remember, it is not a surprise to them that they are getting older and will likely require assistance. No matter what they say, they appreciate your help. The more they are able to maintain their dignity, the easier it will be for them and for you.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.