Alzheimer’s/Dementia

Elder Fraud: a few things you can do to protect your loved one.

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A senior citizen receives mail that promises her the opportunity to receive a $10,000 Sweepstakes check but first she has to send the organization a $25 check or she is told to wire money in order to receive the proffered $10K.  This same lonely person receives CONSTANT phone calls in which many demands are placed upon her to send money or they will come to her residence and cause her bodily harm.

It doesn’t matter how many times you tell your loved one to hang up when she receives one of these calls.  It doesn’t matter how many times you try to convince her that responding to the mail and/or the phone calls will not net her any positive financial results.  She always responds, and because she’s still able to mail a check or drive to Western Union and wire money to these nefarious people, she keeps doing so and finds herself in a heap of financial trouble.

Let’s consider the following mail fraud scenario:  at a long-term care (LTC) facility, the staff, along with the resident’s family members, changed the resident’s phone number numerous times and rerouted her mail to go elsewhere, but because of the persistence and trickery of these unscrupulous people, they always managed to get through the filters set up to eradicate them.  This particular resident’s apartment was finally searched by staff, at the suggestion of local law enforcement and with the permission of the resident, and what they found would make your blood boil.  This resident had shoe boxes full of “Sweepstakes” documents, and once the apartment had been cleaned out, over a dozen large garbage bags filled with documents had been removed.  Once this resident responded to these criminals by sending money, they had a victim upon which they could rely.

I’m not going to address the issue of identity theft per se which is another prevalent type of fraud exacted upon elderly adults.  Let’s concentrate on mail fraud which can certainly lead to identity theft.  With mail fraud, which eventually can lead to  “phone fraud,” the victim in question is oftentimes isolated, lonely, and as most senior citizens will tell you,  is worried about having enough money to get her through her later years.  The promise of a $10,000, or higher, windfall is just too good to resist.  Let’s be honest with ourselves – we can’t resist this type of temptation either.  If you’ve ever purchased a lottery ticket, and I’ve purchased many, you hope beyond all reason that this time the lottery ticket will have the winning numbers, because after all – somebody has to win!  When you’re a senior citizen and money is tight, why not hope beyond all hope that the $10K Sweepstakes could be real, as unlikely as that may seem to us?

 So how does one put safeguards in place to ward off these types of criminals?

My sister-in-law and my father in front of his desk.

If you live close enough to your elderly loved one, have a look-see around their living space.  Do you see any piles of envelopes that look suspiciously like one of these mail fraud schemes?  When my father lived in a one-bedroom apartment in an assisted living facility, as he left the room to use the bathroom and/or to take a nap, I did some Irene-sized investigative work.  I didn’t stop at simply looking at what was on top of his desk, I rummaged through the drawers.  I looked at his checkbook register for suspicious outgoing checks (there were a few.)  I tried to discern if there were any Sweepstakes letters from repeat offenders who thanked him for his previous money submission and asking for more – again, there were a few.  I know that this investigative activity reeks of privacy invasion but if that meant protecting my very generous father who was in the early stages of dementia – I was willing to do so.  And I didn’t stop there.  I cleared his desk of all but one or two Sweepstakes envelopes so he wouldn’t notice that absolutely everything was gone, and I stuffed them in my backpack and took them home to shred.  If you don’t live close enough to visit on an ongoing basis and suspect that your parent who lives in a long-term care facility is succumbing to this type of mail fraud, call a staff department head and ask him/her to have a look at what is visible on top of your loved one’s desk/coffee table.  You shouldn’t ask staff members to open drawers – that’s inappropriate and is actually against most facilities’ resident privacy policies.  Once you are aware of a concerning outcome, then you can take steps to provide personal intervention on your loved one’s behalf.  A phone call to the local Long-Term Care Ombudsman Office located near your loved one will initiate a complaint and that office will attempt to resolve this matter on behalf of the resident – your family member.

Phone fraud harassment – one step closer to elder abuse.

I became aware of a woman who received numerous calls a week from these scammers, threatening her with bodily harm if she didn’t wire the requested funds.  These criminals have no conscience whatsoever so they aren’t shy about yelling at the elderly victim; making fun of them when they cry on the phone because they’re afraid of the threats; calling the elderly person a loser and that they’ll never have enough money to carry them through the remainder of their pitiful lives.  As cumbersome as it may be, I strongly suggest you have your loved one’s phone number changed.  Only those who need to have the number: family, close friends, medical personnel, and facility administration, should be given the new number.  You may have to do this several times before the stream of fraudster phone calls come to an end.

Resources on which you can rely.

The AARP website has links to resources that are very informational regarding elder fraud.  Once you access their website you can link to the chapter that is active in your local area and you’ll find contact numbers for Fraud Fighter reporting.  Additionally, the Attorney General’s Office (Washington State website linked here) is very helpful.  Not only can you report cases of fraud through their website, you will also find a list of scams currently making the rounds.  Let’s not forget the U.S. Postal Service as well.    They have a postal inspection division that walks you through the steps of preventing and/or eliminating mail fraud.  I think once you start typing elder fraud into an internet search engine, you’ll find numerous links, such as The Elder Fraud Project, that will prove helpful.

Whatever you do – don’t sit idle and ignore the signs of mail fraud.  I can guarantee you that the scammers trying to acquire as much of your loved one’s money as possible are not idle – they’re hard at work to enrich themselves at your loved one’s financial expense.

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Be an advocate for your aging loved one.

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If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?

In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility.  Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job.  By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.

I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests.  It’s easy to have a perhaps unwarranted laid-back attitude because:

  1. mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
  2. mom is living in a ritzy/expensive place so it must be the best option for her; and/or
  3. this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.

I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom.  Let’s take each point separately.

  1. Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one.  However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year!  There’s a reason why caregiver turnover is so high.  This job is TOUGH and the pay is unconscionably low.  A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years.  This report is worth your while to read.  Learning is power – right?
  2. Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided.  Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great.   Sometimes what I call “generic” buildings oftentimes provide as good or better care.
  3. The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care.  So a waiting list does not necessarily represent quality.

So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.

SPEAK UP.  You don’t have to be a squeaky wheel to get the grease.

  • Be persistent yet respectful.
  • Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
  • Be present: in person if you live nearby or by phone if you are a long distance family caregiver.  Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.

OBSERVE.  When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance.  How does it differ from visit to visit?  Is her room tidy, clean and uncluttered?  One way to observe staff members in action is to accompany your mom on facility outings.  Observe the staff’s interaction with the residents.  Do they speak respectfully to them?  Are they patient with them?  Do the residents enjoy their outings or do you get the impression that these outings are forced upon them?  All of these impressions are important towards discerning what goes on in your absence.

ADVOCACY RESOURCES.  Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident.  Each state in this country has a LTC Ombudsman program.  Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.

Senior Health Specialists? Geriatricians? Where are you?

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The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.

Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health.  “What about geriatrics?” I ask them.  “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!”  They don’t buy it, especially since Geriatricians are  one of the lowest paid medical specialties amongst the medical community.

Square Dancing class at my town's Senior Center.

Ugh!  Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us?  Not very many according to the linked article above.  According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older.  No wonder people can’t find a doctor who specializes in Senior Health!  I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients.   Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia –  as they do their patients in their 20’s thru 70’s.  That just won’t cut it.

Older patients have more complex conditions – and more of them.  If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment.  “What can you expect at your age Mrs. Jones?  Be glad that you’ve lived this long!”  I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.

My wonderful Dad, pre-Alzheimer's, on my wedding day.

Think about it my fellow Baby Boomers.  Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing?  I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment.  The vulnerable adults among us might not realize that they have choices.   They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives.  Who loses in that equation?  We all do.  If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?

Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us.  What are your thoughts about this glut of Senior Health professionals?  How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?

When your loved one with Alzheimer’s no longer recognizes you.

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Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you.  As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room.  Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you?  Why are you here?”

You can’t imagine this scenario unless, of course, it’s happened to you.  I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.

Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church!  Kind of funny, right?  But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.

My dad's final resting place - one month after my last visit.

I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.”  Needless to say a) I’m his daughter; and b) my name is Irene.  My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.

Did it feel weird for him to call me a name not mine?  You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first.  Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer.  What I would have given for many more opportunities to have passed off as his friend Jim.  It was not to be.

The loss we experience with non-recognition.  I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history.  No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique.  Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same.  Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive.  That’s a difficult pill to swallow to be sure.  There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.

I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive.  A caregiver can’t take your place; a well-intentioned volunteer can’t take your place.  Only you can transmit the familial love that will make a difference in your loved one’s life.

Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life.  If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.

Solo Caregiving.

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My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support.  When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.

Garage Sale fundraiser for the local Alzheimer's Association.
Garage Sale fundraiser for the local Alzheimer’s Association.

CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.

Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing.  Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance.  Now is the time to be very transparent with them and tell them what you need.

Having dinner with my dad and his late-in-life Bride.

DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.

There is no shame in inviting yourself to dinner.  If these are true friends/acquaintances of yours, they will welcome you into their home.  Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis.  Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so.  Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.

My wonderful Dad, circa 1960’s, being a jokester.

ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!

I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs.  Let’s look at the difference between the following offers of assistance.

  1. “Hey Sam, call me if you ever need some help.”
  2. “Hey Sam, could you use a little extra help around the garden?  I’m all caught up with my yard work and would like to help you in any way I can.”
  3. Hey Sam, we always cook for a crowd and always have some leftovers.  I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”

In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help.  You’re basically forcing him to ask for help.  In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out.  If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night.  How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”

Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs.  Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver.  If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.

Caregiving: The Ultimate Team Sport

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What’s a pitcher without a catcher?  A quarterback without a receiver?  A point guard without a center?  Individuals – that’s what they are.  They are not a team.  Caregiving should never be an individual effort because quite frankly, one person can not do it all.

Take a deep breath; think happy thoughts; and do your best.

Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get.  For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals.  As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever.  Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor.  He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care.  Getting on the approved list might involve one or both of the following:

  • Facility Care Plan/Residential Agreement.  Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition.  There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care.  Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns.  If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
  • Power of Attorney for Health Care.  This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own.  I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.

Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.

Alzheimer’s Walking Team: myself, my hubby and my brother

Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths.  Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks.  As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load.  The good news, however, is that the GM is not alone – there are additional members of the team.

FINANCE MANAGER.  Your older sister is a finance whiz who’s very comfortable crunching numbers.  She gets to take over the day-to-day system of bill paying, investment monitoring, and the like.  You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.

INSURANCE MANAGER.  One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare.  Congratulations, his strength will contribute greatly to the whole.  But you don’t have to work for an insurance company to excel at this task.  Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies.  The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid.  This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance.  But effective Finance & Insurance Managers can successfully get the job done.

TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month.  Terrific.

Anyone need a cab?

That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized.  Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way.  This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.

FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING.  Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road.  If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them.  My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.

A team’s success is attainable – but each member has to dedicate themselves to the task at hand  for that to happen.