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.
HOSPITALS — once synonymous with a place to go when you’re REALLY sick is now the last place you want to be unless it’s prescheduled surgery with a doctor you trust. If you’re elderly and/or on Medicare you are treated as a money machine — not a person.
Here’s how it works . . . depending on how sick you are is how quickly you’re seen. If you have an HMO or PPO assigned to your Medicare plan then everything is a predetermined price. If you only have a medicare card then the patient becomes an ATM. This means that the nurses and techs will run as many
tests as reasonably possible (that insurance will pay). The Doctor will review the chart for a “diagnosis” which, in my experience, is usually “inconclusive.”
The first time you go to the ER they will probably let you go home after the inconclusive tests BUT should you go back within 72 hours the hospital will admit you. This is because the insurance companies won’t pay for a second ER visit without a diagnosis and admittance.
Now, here’s what is very important — you cannot let your elderly Mom, Dad and/or relative stay in the Emergency Room by themselves. Here’s why — the administration will have them sign consent forms for numerous tests that do nothing except take up time. Secondly, the treat them horribly! Here is my story:
I took my 90+ Dad to his HMO doc. He was having balance issues with other symptoms that portend a stroke. We rush to the ER and sit in highly uncomfortable chairs with all types of sick people. After approximately 2 hours they call Dad into a “room.” The medical techs hook him up to a glucose drip and leave the room. For the next 3 hours he is taken from one machine to another for test after test. Because my Father is elderly he meekly goes where he’s told. At the end of this interminable afternoon we receive an “inconclusive diagnosis” and he is allowed to go home.
Two nights later the same symptoms occur — my brother calls 911 and Dad is whisked off to the hospital. I get home in time to follow the ambulance to the same hospital where we’d spent the afternoon. I stay with my Father — they finally move him to an ER room and begin to do THE EXACT SAME TESTS they did 48 hours earlier. I question every one. It is now 1 am in the morning — I find blankets and sleep on the floor next to Dad’s bed because they are going admit him. (Remember, if they don’t admit him the hospital won’t be paid.) In every case, with every test, the results were the same as the ones 48 hours earlier BUT now the diagnosis is not inconclusive . . . it’s we need more tests and observation. After two days they allowed him to leave with the diagnosis of dehydration!
Bottom line, if you have an elderly parent or grandparent do not trust the hospital. When either of my parents stay in the hospital overnight we hire a “babysitter”. Yes, it costs money but your loved one doesn’t wake up to an empty room trying to figure out where he or she is. Further, I check the chart constantly to see what is diagnosis and medicine is being used. Truthfully, it’s like having a child — the difference, I’m grateful to be able to reciprocate what was done for me.
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.
On July 28th, at 1:00 am in the morning my phone rang, it was the hospice nurse informing me that Mom had died at 12:28 a
And yes, our hospice nurse had prepared us for this . . . he said as nicely as he could that she was “leaving”, that “it was time” . . . using gentle words to describe death. Still, when the call came early Friday morning I wasn’t’t “prepared.” Why? Because no one ever is.
As you know if you’ve been reading my columns, the family had done all we could to prepare for death. So the lesson learned was PREPLAN. My brother and I had hired a funeral home which allowed us to make our father the focus of our lives in the the immediate days after his partner of 63 years died. He insisted on seeing her one last time, my brother called the funeral home and they prepared her for Dad’s visit. My father insisted on a small, familial memorial service — not a problem, we focused on the service and the reception after. Caterers were hired, programs were printed and music abounded.
And yes, all this costs money but there was no “guilt money”. We knew what we could spend and had done all the budgeting when hiring our funeral home. In fact, we told the director that when Dad dies he wants his ashes placed in a military cemetery in Ft. Worth, TX – next to one of his best friends, our cousin General Akin, “so they can pal around.” The funeral home takes care of that, as well.
So, yes it all worked to our benefit. Mom was cremated, some of her ashes placed in the ground at the nearby churchyard and the rest to be mixed with Dad’s when we take them to their final resting place. What doesn’t go away, nor should it, is the grief. it comes in waves. At the service when I spoke I didn’t shed a tear. Two days later, telling a ‘stranger’ the story, my eyes welled with tears.
Grief counselors tell you this is what happens. I was shocked at myself, I knew Mom was close to death but when the finality happens it hits hard! We even had time for last rites, last songs, last moments . . . but death is final and no amount of preparation prepares you for it.
Revel in the memories, think of the good times and admire your loved ones for all they accomplished . . . including you! Yes, they do live on in our hearts.
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.
Well, the call finally came, “Ms. Reaves, we’d like to re-evaluate your Mother. She has lost more of her core function and we think she might be a candidate for Hospice care.”
Here’s the thing, dear reader, I thought Mom was already a candidate for hospice but she wasn’t’ approved the first time she was evaluated. Now, she is approved and I realize — this could be the end. My emotions are mixed. I’m sad one minute then remember her non-existent quality of life and I know it’s appropriate and its time.
The wonderful thing about Hospice care is that the focus is the patient. The goal is to keep her or him as comfortable as possible. This means that besides the care Mom is already receiving there will be someone there two to three times a week to make certain she has no pain and is comfortable.
What is Hospice? I had to ask myself that question and found several definitions. 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.
The term “Hospice” comes from the 11th century where hospitals had an area that was “hospitality for the sick, wounded or dying”. In today’s medical and insurance world, it is palliative care for the incurably ill, either in a medical facility, nursing home or at home. Medicare covers it therefore if you’re a US Citizen or Green Card holder you are eligible.
To qualify for Hospice the patient is evaluated by a doctor or nurse practitioner and he prognosis must be that the person is terminally ill and has less than six months to live. The truth is many hospice patients live longer than six months at which time they are re-evaluated. If placed in Hospice again, the six months starts over.
In today’s medical world, (and we know I’m a bit cynical) there is both Hospice care and Palliative care. Hospice is covered by Medicare, Palliative care is not. It is often covered by insurance (if you have a PPO) or you can pay out of pocket. In both cases, the patient is going to die in the “short term” — but it might be more than six months.
This is VERY IMPORTANT: once your family member goes into Hospice or Palliative Care it means that there are NO MORE CURES. The caretakers want the patient pain free, and supported both emotionally and mentally.
If your parent or grandparent is in an Assisted Living Facility and begins a decline, the Facility prefers them to be in Hospice or Palliative Care. This means your family member will be receiving more attention but that also means their regular doctor is not in charge anymore. It’s also a signal that death is not far away – a sobering moment for you and your loved one.
During the journey many of us will take with an older family member there will come the juncture of whether to have in-home care, a move to a smaller place or a move to an assisted living facility.
On an emotional level, we all think it’s better for everyone if they stay in their home with in-home care. That works if family members are within a 15 minute drive. If this isn’t the case then one must really begin to think about “the best care.” Best care means the best for everyone concerned. These are tough issues and we tend to put off these decisions until you need to make them. That is the wrong time — you’re under an amazing amount of pressure, emotions are swirling and not all family members agree on the definition of “best care”.
My father always said he was going to die in his home. That he would only be taken out “feet first”. The children always went along with him because there was no need to rock the boat. Mother, whose dementia was getting worse, would agree with Dad. In order to accommodate Dad, we hired a caregiver to come in three times a week to “entertain” Mom. The bad news – caregivers don’t stay forever. (In this case 6 months which is a long time in the caregiver world.) We hit the jackpot with our first one but then the next three simply didn’t do the job. They were late, wouldn’t’t show up . . . all the usual employment issues.
In our opinion, several questions must be asked:
How many family members living in the home?
Do both need care?
How mobile are they?
Does anyone drive?
Do they need 24hr care or will 4 to 6 hours 3 times a week suffice?
Does anyone have dementia/alzheimer’s?
Once these questions are answered then it’s easier to come up with a solution. Following are some practical things to think about:
How much money is there?
Is there Long Term Care policy?
Does one need more care than the other?
Is it only one family member?
Do you need to be “medicaid ready”?
Are there other benefits for which your family member is eligible?
In the case of Mom and Dad we had a catastrophic event and we had to move them from their home to a totally new location (see my first article). This experience is how I know that asking your parents what they want done in their ‘final chapter’ is easier said than done. It’s an extremely difficult conversation and we tend to avoid it. DON’T! If you don’t think you’re capable of having this discussion, hire someone to assist – sometimes our loved ones hear bad news better from outsiders. If you’re emotionally wrung out because you’re in the middle of the “journey” — you are not alone.
Parenting Your Parents has mental health professionals who are skilled in family matters as well as move managers (a person who manages the entire move — from sitting with the person and deciding what to keep, to selling/giving away the surplus and hiring and managing the move) — all of whom assist in making any transition as easy as possible . . . and none are easy.