Gabriel García Márquez states it beautifully, “It is not true that people stop pursuing their dreams because they grow old, they grow old because they stop pursuing their dreams.” When Dad turned 90 I realized 60 was young (and I wasn’t quite there yet). Think about it, the first 30 years, you’re finding your way, the next 30 years you’re working your way and I say, use the last 30+ years to do it your way!
The mindset of the Greatest Generation was to work until you’re 65, retire, receive medicare and social security. I remember, Dad did that and within a year he was bored out of his mind and partnered with a good friend in a small exploration business. That kept him busy until he was about 80. Then he started volunteering at a church-run thrift shop weekly — he quit that when Mom got sick and she became his full time job.
As I enter my 60s I’m launching a company, working my consulting job and writing articles. I love the deadlines and the intellectual stimulation. I think we all do. That makes me think it really is up to us to stimulate our minds in ways that make sense for each of us individually. At the age of 77 Donna Shalala is running for Congress, at the age of 81 Madeline Albright is on tour for her latest book and at 93 Jimmy Carter is still relevant! Yes, they’ve chosen a national platform but being relevant in a smaller community is no less satisfying.
With today’s technology and car-ride services there is no excuse to stay at home if you want to get out. And, if you get out, you’re more relevant. I know an octogenarian amateur playwright (soon we’ll be seeing one of his summer shorts!), and several septegenerian Starbucks employees. All are happy and “pursuing their dreams.” Let’s join them!
From March 6 to April 8 of this year, I experienced five deaths of people I consider part of my life. Two were wonderful with whom who I had the pleasure of sharing some time and three were dear friends. All were under the age of 75. Only one of these deaths was from cancer — the other four were unexpected and left families and friends reeling.
There is, in my humble opinion, only one way to conquer death — live a good life. Perhaps my previous columns have been too obtuse . . . so let me make it clear — you must preplan to age gracefully and comfortably. We all have different needs and it is YOUR needs that must be met. It seems that as we age we view ourselves as less relevant but are we really?
When people talk about living a good life they discuss “paying it forward”, or being kind to your neighbors, or creating world peace in your environment. I’m pragmatic, therefore I view living a good life as being relevant and keeping my and body healthy. How do we do that? Easily, we plan. Once we begin using medicare I suggest we begin to plan for our last years — which in today’s world is 80 to 100. The longer you live, the longer you will live. But, and its a big but, we want to live it well . . . and that means having to deal with the senior care/elder care bureaucracy.
I have a plethora of columns discussing how ‘institutions’ are obstacles not cheerleaders — why – because “seniors” are not valued and easy targets. The exact opposite is the real truth – we vote, we pay taxes, our children are the current workforce and we have experience.
To that end, how do we stay relevant? It’s easy, preplan! Whether you have parents or a partner who is older you have to discuss how to stay healthy, both mentally and physically. Some of the mental health is dependent on financial health. What insurance policies are available? How many financial accounts are there? Does the home and financial accounts transfer without going through probate? These are DIFFICULT! conversations but once done provide true peace of mind.
So, I urge you to look at the non-medical side of your life and begin to ask yourself, your partner or your parents the tough questions then find the solutions so that we can all “Vive La Vida Loca.”
- Are the financial instruments in order
- Are the legal documents in order
- Is your house “too much”, does it need de-cluttering or should you move
- Are you, your partner/spouse or parents healthy
ARE YOU HAVING FUN?!?
LET’S DO THIS!
As we all now know, after Hurricane Irma fourteen elderly souls died because the nursing home in which they resided did not have a electricity after the storm. As a consequence, they “overheated” and died. Well, there is good news – the Florida Legislature and Governor have placed $37.1 billion dollars in this year’s fiscal budget to be used across six health care and social service agencies.
Florida’s medicaid program is the largest recipient at $29.2 billion and Children & Family Services receive $1.7 billion. Those living in nursing homes will receive a 25% raise, from $105/m to $130/m. Nursing homes are now required to have generators with enough fuel to cool buildings during elongated power outages. The above monies are all coming from Florida taxpayers but my favorite part of the legislation is not tax based.
Starting this fiscal year, nursing homes (that receive medicaid dollars) will be paid on a set formula. These providers must meet certain “direct patient-care” requirements as well as “quality of care” requirements. In other words, if a nursing home only meets a minimum standard, they will be paid a minimum amount and given a set amount of time in which to bring the ‘home’ up to the formulaic standard. As the homes hire more qualified staff and add amenities to its building and programs – they will receive larger payments. As one law maker put it, they have to spend money, to make money.
As a senior’s advocate I’m thrilled that our state government realized how badly these “homes” were treating their patients. Yet, it took senseless deaths to have a focus placed on how our greatest generation and aging or ailing baby boomers are treated when they can no longer treat themselves. That is where we must be more vigilant.
As I write this, I cannot help but remember the 17 people who died very prematurely at Parkland High School. And, yes, because of the deaths and the student’s activism we’ve put in some stricter state gun regulations. Also many large gun sellers are now refusing to sell to anyone under 21. Still, much like our senior citizens, why must it takes death to examine our mores and ethics.
We at Parent Your Parents think this is a terrific “true experience” article authored by Jacqueline Marcell. Jacqueline is also the Author of Elder Rage @www.ElderRage.com. Check it out!
Jacqueline Marcell, Author, Elder Rage www.ElderRage.com
For eleven years I pleaded with my challenging elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”
When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was so heart-wrenching to have my once-adoring father be so loving one minute and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house. I took him to several doctors and even a psychiatrist, only to be flabbergasted that he could act charming and sane when he needed to.
Finally, I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and PET scans. After ruling out numerous reversible forms of dementia such as B-12 and thyroid deficiency, and evaluating their many medications, he shocked me with a diagnosis of Stage One Alzheimer’s in both of my parents – something all their other doctors missed entirely.
What I’d been coping with was the beginning of Alzheimer’s, which begins intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime of screaming and yelling to get his way, which was coming out now in intermittent over-the-top irrationality. I also didn’t understand that “demented does not mean dumb” (a concept not widely appreciated) and that he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.
Alzheimer’s makes up 60-80% of all dementias and there’s no stopping the progression nor is there yet a cure. However, if identified earlythere are some FDA approved medications (more in clinical trials) that in most patients can mask dementia symptoms and keep patients in the early independent stage longer.
Once my parents were treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s volatile aggression, I was able to optimize nutrition and fluids with much less resistance. I was also able to manage the constant rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I learned to just go-with-the-flow and let the hurtful comments roll off while distracting with a topic of interest from a prepared list.
And most importantly, I was finally able to get my father to accept two wonderful live-in caregivers and not drive them crazy and to quit. Then with the tremendous benefit of Adult Day Health Care five days a week for my parents and a support group for me, everything finally started to fall into place.
Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a “normal” part of aging. Since 1 in 6 women and 1 in 11 men are afflicted by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and educate their patients so everyone can save time, pain, money, heartache… and a fortune in Kleenex!
This is an editorial to the Miami Herald written by H. Frances Reaves, Esq., President of Parent Your Parents, in October of 2017. This was written after Hurricane Harvey and Irma and the mirror placed on Senior Services. As we suffer through a very cold winter these words are still prophetic.
IF YOU HAVEN’T SEEN the video of the residents of a nursing home in Houston, Texas sitting in waist high water simply search “video of seniors in waist high water” in your browser – the You Tube video comes right up. School children were evacuated, families were evacuated and who was left behind . . . seniors. Two weeks later, in the aftermath of Irma, 14 seniors die from overheating in a Broward County Nursing Home.
If these seniors had been children the outcry would have been much louder and punishment swifter. An excellent example is the most recent earthquake in Mexico. The school caved in on top of 24 children and four adults. The volunteer rescuers were there within minutes and the TV crews transmitted the entire search and rescue for more than three days. That would not be the case if this had been a senior citizens facility.
Fariola Santiago wrote in her September 24th column that “the elderly are like children, frail, unable to care for themselves, and vulnerable to abuse and negligence. Those who don’t have money or advocates and require round-the-clock care end up in places with deplorable conditions . . .” I agree with Ms. Santiago regarding the elderly but disagree that all nursing homes have deplorable conditions. We also need to remember that, with the exception of one “lonely soul,” everyone had a family . . . and the family did not take them from the ‘deplorable home’ even after they knew about the power failure.
Baby Boomers, Gen Xers and Millennials beware — you, too will be a senior! Seniors, are an older version of who we are today. We espouse the sentiment that, “I only want to live a long life if I have a quality of life” but legally we don’t have a choice once our mind collapses.
What we don’t discuss is that dementia does not take away your intellect, mental pain or physical pain. Dementia takes away the ability to communicate effectively. It also absconds with your memory – which allows we the children to believe that with memory loss there is a loss of all senses. That is not the case. The 14 elders who died felt pain and the first to die truly suffered because they did not have the benefit of hospice care.
No doubt, the staff at this nefarious nursing home was negligent, incompetent and uncaring and they were allowed to function as “caretakers” for years. It took a hurricane and power outage to bring it to light. Had this been a daycare center the negligence would not have been allowed to continue.
As the President of a company who advocates for seniors, finds resources, counsels families and assists in medicaid preparations, my experience shows that most of us face living in a medicaid facility. Unless you have a healthy pension or half a million dollars you will not have the money for dementia care in a private facility. Today that runs between six to seven thousand dollars a month. If you qualify for medicaid, nursing homes run about $700.00 and medicaid picking up the balance.
We must look in the mirror! let’s begin the process of treating our elderly loved ones as our children. Treat them as you treat those around you. Hold the Assisted Living Centers and Medicaid Facilities accountable and — START SAVING!!
What is Hospice? First, it is a type of care and philosophy that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient’s pain and symptoms, as well as attending to their emotional and spiritual needs. OK – so what is palliation? Palliation is a service that makes you feel better even though it can’t cure you.
Hospice is a positive addition to our medicare system because the focus is the patient. The goal is to keep each patient as comfortable as possible. This means additional care over what your loved one is already receiving. Between nurses, social workers and priests, there is someone there two to three times a week to make certain there is no pain or discomfort.
The other side of this service is that it is run by medicare. That means that Hospice is free if you’re in Medicare as most of our seniors are. This also means not all Hospice providers are the same. There are thousands of Hospice providers and you have to be certain that they are doing their job (much like those Medicare doctors I’ve described in earlier articles).
I’ve had two different patients in different facilities with different providers and the difference was night and day. One provider is in a nursing home that accepts medicaid patients, we’ll call it A for purposes of this article. The other provider was for a client who lived in an assisted living facility – one that cost $4500/month. This Provider is called F.
A little background – once a patient has been admitted to Hospice, its doctors, nurses and aides “rule” the care. If the patient is a diabetic he or she will still stay on diabetes medicine but perhaps be taken off non-essential medication depending on the comfort level. Yes, the facility still feeds and provides a clean environment but Hospice is in charge of the patients comfort.
In most nursing homes the patients are in full blown dementia but not necessarily at the end of their life physically. Therefore, it is much more difficult to qualify for Hospice in a nursing home. However, once the patient is accepted the care for my nursing home client was beyond great. Her nurse was Mark and I could call anytime to check on her (once the children had given their permission)
The other client was in an Assisted Living Facility and qualified for Hospice before the children asked. They had no indication he was in his last days, weeks or months. Once their loved one become uncomfortable and disoriented they started receiving a “run around.” Parent Your Parents was asked to intervene. Here’s what we found, the Assisted Living Center blamed it on Hospice and Hospice blamed it on the Assisted Living Center. We started calling the Hospice office daily to ask for more help. Hospice told the children that babysitters were needed (at $20/hour). That is when we went into advocate mode. I reminded the Hospice company that their job was comfort and they had to start providing real comfort, not advice to the children and Assisted Living Center’s employees! Remember these companies make money and paying people to babysit takes away from their bottom line. The end result, this Hospice company did what they advertised and found a bed in an extremely lovely location where the client passed away comfortably and peacefully.
Bottom line – not all Hospice is created equal.
As I’ve discussed in several articles the discussion of money is a must but can also be a monster rearing its ugly head. We’ve discussed having Powers of Attorney in place for our elderly loved ones. Most states require one for finance and one for medical — two different trusted representatives should be chosen. This allows for shared responsibility and shared communication.
Although the trusted loved one is normally fine and nothing happens, it can be a slippery slope which is why I recommend any financial moves to be as transparent as possible and shared among the siblings or trusted loved ones. The vast majority of family members rarely swindle or take advantage of their parents or elderly loved ones but it does happen and the idea of unrestricted funds can be a temptation. This is why we recommend that there be an “informal transparency” to protect your elderly loved one and you.
Following is one system to implement – one trusted representative is a signatory on the elderly loved one’s checking accounts and a second trusted representative has access to it (i.e. – given the user name and ID). When a separate account is created to pay for care, we suggest two trusted representatives on the account.
The other pitfall are the family members, friends and care takers who will try to manipulate your elderly loved one into private gifts, be it through money, credit card purchases, a car for their grandchild (we’ve seen this) or simply write them into the will. Again, this is why financial transparency is a must. If the monitoring is spread among many it is much more difficult for one to have undue influence.
The elderly community is rife with stories of hired “trusted” caretakers who steal little things — trinkets, jewelry, food and petty cash. (See my column on hiring and monitoring Caretakers). Again, anything valuable should be removed from the house and gifted to the different loved ones and/or trusted representatives. If the family doesn’t agree we suggest outside assistance in the form of attorneys and psychiatrists. I always hesitate to use either because . . . they cost money!
I am confident most of you heard the news about the eight seniors who died from overheating. They were all in a licensed “nursing home” in Hollywood Hills. ‘Nursing Home’ is a euphemism for a home for seniors who are at the poverty level and qualify for medicaid.
Nursing homes are like every other industry — they have to make money to survive. In the case of nursing homes they’re paid by the state medicaid fund and it’s per pa
tient. This fund is made up of state and federal dollars. Obama Care expanded medicaid in the states who took the federal dollars but Florida is not one of them.
Bottom line, these are not the luxurious environments for either staff or residents. In my parents case, Mom had been in a lovely residential facility where she was one of three or four people. Her Long Term Care Insurance paid for it. She outlived her two year policy and we had to place her in a Nursing Home. It was our only realistic option as Mom’s care in an Alzheimer’s facility would be close to $7000,00 a month. Mom and Dad couldn’t afford it and neither could the children.
In pursuit of the best we could find, I went to several nursing homes and learned more than I needed to know. All these homes are very austere and it’s a shock! Bare floors, usually
formica, and waiting rooms with plastic chairs. Almost all the receptionists were behind a barrier — some better designed than others.
The patient population is made up of mostly Alzheimers and Dementia sufferers. All the residents are in a wheel chair, a portable bed or never moved from their beds.
Another surprise, the aides often use pulleys attached to patients to change their clothes, move them to the shower or simply change their diapers. Depending on the home, these medical aides must change and clean about 19 patients each. Some work in tandem others work solo — it all depends on the chore.
Further, most patients are only bathed twice a week, maximum three times a week. During one of these showers their hair is washed. Bottom line, it’s not how we envision our last days, weeks, months or years of life.
On the good side, the ‘better nursing homes’ have excellent care. They hire a team of Geriatric Doctors that include Psychiatrists. These Geriatric groups come to the Nursing Home through a PPO and the doctors physically visit once a month. There is usually a Podiatrist group that also visits once a month (Medicare pays for podiatry services) and a dentist who comes once a quarter. The day to day care is with the Registered Nurses (RNs), Licensed Professional Nurses (LPNs), physical therapists and medical technicians. They also have a contracted Hospice service.
Here are some tips when you need to look for a nursing home:
What is the turn-over rate of its employees
Needless to say, the less turnover the better the place. If the staff is not leaving then something is going well — usually their paid above average wages
Is there a hair salon
If there is a hair salon then there’s a market for it. This means the residents take pride in how they look. People who take pride in themselves care about their environment.
Is it clean
As we all know, cleanliness is godliness
Is there a smell
Again, if it smells that means it’s really not clean – no matter how good it looks
Is there a smile on the faces of the staff
A smiling staff means a happy staff
Again, hopefully it doesn’t come to this but if it does, know how to choose the best one.
It’s not easy to parent your parents — it’s not a pleasant role — it means Mom, Dad or both are getting weaker and none of us want to admit the role reversal has begun.
When I consult with clients I hear time and time again — Mom doesn’t want to leave her home, Dad is not going to allow any one else to pay his bills, There is no need to force anyone — the name of the game is to persuade in an assertive, caring and respectful manner. For their sakes and yours, embrace the role!
After Mother’s decline into Alzhiemers, my brother and I were thrown into the role reversal with little or no direction. Here’s what we learned:
Accept Your Role. No one else can do it with your love so embrace it and consider it an honor. But for them, you wouldn’t’t be here.
Be Assertive. Yes, at times you will have to tell Mom or Dad (or both) what to do. Of course Mom doesn’t’t want to move from her home — you have to tell her (gently and politely) that she must. You explain the reasons, answer her questions and, as she did with you, persuade her that “this’ is the best way.
Pay Attention to the Basics. Are your parents showering regularly? Are they having regular meals? Are they taking their medication on a timely basis? If not, see above — it’s time to be assertive and decide how best to move them forward.
Insist. Or, if you prefer, be firm. When your parents resist keeping on insisting. “Dad, we have to do this, we’ve gone over it a million times – let’s not fight about it.” Again, no yelling or shoving – just gently insist.
Prepare all the financial and legal documents. Taking the helm of your parent’s finances is a daunting but necessary task. Make yourself, or your sibling, a signer on their checking accounts then have them sign a Power of Attorney for both financial and medical decisions. This must be done before they lose their mental capacity. If you don’t do this it will be much more difficult and costly when they lose their ability to make decisions.
At the end of the day, here is what you have to remember – when it comes to parenting your parents you have three choices:
- You care for your parents yourself
- You hire someone to care for your parents
- You allow them to enter a Medicaid facility
These alternatives all have pluses and minuses. Most of the decisions are based on finances and nothing and no-one is perfect so after you’ve been assertive, and insistent forgive yourself – your parents did!
If you haven’t seen the video of the residents of a nursing home in Houston, Texas sitting in waist high water simply search “video of seniors in waist high water” in your browser. School children were evacuated, families were evacuated and who was left behind . . . seniors. Two weeks later, in the aftermath of Irma, 14 seniors die from overheating in a Broward County Nursing Home.
If these seniors had been children, the outcry would have been much louder and punishment swifter. An excellent example is the most recent earthquake in Mexico. The school that fell down on top of 24 children and four adults had rescuers there in minutes with TV crews transmitting the entire search for more than three days. I fear that would not be the case if this had been a home where senior citizens lived.
It is this dichotomy that led me and my partners to found Parent Your Parents (PYP)(parentyourparents.com). How could anyone allow their “charge” to drown or die from overheating. Yes, these Assisted Living Centers and Medicaid funded nursing homes are negligent but isn’t that also the case for the families who left them there? Would they have ever done that to their children??
There is no criticism here — simply a look in the mirror. If your parents or grandparents are in one of these homes today the chances are EXCELLENT that you will be as well. Yes, we can buy Long Term Care Insurance but today’s policies don’t cover you for the duration of your life. We are living longer and unless you have a minimum of $5 million there is a very good chance you will use all your money in the last five years of your life for healthcare.
As a child of an aging parent or loved one there comes a time and you must take charge. It isn’t easy and it wasn’t easy for them when you were a cute kid begging for a kitty and they said no. But, if it’s time – face it .
First, honestly asses where they are mentally and physically. Discuss options with your siblings and present a united front — just like your parents did when you were a child. You must have a Living Will, you must have a Power of Attorney – one for finance, one for medical. You must go to the doctor with them and make certain they are receiving the best medical care. The doctors MUST know that you are on top of their health. (Remember, I fired my parents doctor, see Article 2 – How to Get the Best Care Through Medicare),
Secondly — ask them what insurance they have . . . is it life insurance, supplemental health insurance, burial policy, Long Term Care —- and, the most difficult question — what is their financial status? None of this is easy but none of it takes financial acuity — it takes emotion, love, tenderness and hand holding. Remember when you were a kid and your parents took you through some of life’s trials with the same skills?
Disasters like Irma, Maria and earthquakes bring out the best and the worst. Now is the time to be the best.