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.
My nephew was getting married — everyone in our family was thrilled — we love his wife, love him and love that they found each other. The wedding was in Texas — Mom and Dad live in Atlanta. Mom is extremely ill and cannot travel. Dad had just gotten out of the hospital and we could not travel. Our big fear — what if one died the weekend of the wedding?
My brother and I called several funeral homes to discuss options. We also consulted friends and my brother’s priest. During the course of this journey we discovered that family owned, multi generational funeral homes tend to be more gentle and understanding. They listen to what you want and explain what you need. There are several here in Miami — the oldest is Van Orsdel who took care of Eddie Rickenbacher and Marjorie Stoneman Douglas.
Most of us hate the idea of ‘visiting the funeral home.’ The idea of death and its finality brings discomfort. In this particular case Mom and Dad are both alive and we were there for selfish reasons – not wanting a wedding interrupted by death. Yet, as I write this, it was the smartest decision we ever made (more on that later).
There is nothing INEXPENSIVE about the simplest of funerals. The entire “funeral experience” has changed. It used to be 30% of the deceased were cremated and 70% buried. Today it’s the opposite, The average cremation costs in Miami are $2000. Then you need an ash container (beginning at $100.). Caskets range from $3000 up and add to that the burial plot, the actual burial and the memorial service . . . bare bones cost is about $6000.00. And then there’s the celebration of life . . . shiva . . . wake . . . which, arguably is the most important part of this process.
The first decision is the manner of ‘the goodbye’ – cremation or a burial? This brings me to insurance policies for burials. There are policies that cost from $50.00 to $100.00 a month which will pay out enough to cover the cost of the funeral and burial. It’s all a question of how much you want to pay. I know many of us on Key Biscayne think we have the money to bury a loved one but do you really have $7,000 to $15,000 sitting around for a burial?
Once that decision is made, it’s time for the legalities. Each state is different but all require notarized signatures. An example – although I am my Mother’s Power of Attorney (POA) for everything, my father had to sign the document allowing her cremation. However, Dad is not the person who signs for his own cremation — that was my brother and me as mother is non compos mentis (not of right mind).
Lastly, the choice of the receptacle or casket – another big financial hit – or not, depending on what you choose. Today, many funeral homes offer rental caskets (a variety of pricing) for the memorial/viewing or church service of the family member who will be cremated. A new trend is “cremation viewing” . . . in other words you can watch your loved one enter the cremator.
My brother and I went through this entire experience together. My advice — do not do this alone — no matter how lovely the people at the home there is an emotional toll. Having another person with you is calming.
We now have everything in place so when “it” happens we will not be making decisions with heavy hearts or guilty minds. And, the icing on the cake – my Father asked me what arrangements we had made. I asked him if he wanted to hear what we had in mind and he said yes. I told him that he and Mom will be cremated and after both have died (and I used that word) we were flying their ashes to Ft. Worth, Texas (Dad’s a Texas boy). There we will do a memorial service at their church and a party at Riviera Country Club. Dad loved the idea! Rites and Rights – done!
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.
It’s a good news/bad news scenario. The good news, you have enough money to have in-home care. The bad news, it’s implementation time — finding the right company or person. This is a slippery slope — especially in South Florida.
Most of us reading this article have never dealt with caregivers —for ourselves or other family members. Questions to keep in mind: Is there a license necessary for this type of work? What happens if the person harms my family member? Is there a background check for the caregiver?
These questions are easily answered if you use a reputable bonded company. A “bonded” company is one who has a “surety bond” and if anything happens to your loved one like theft, maltreatment, or injury, the company cannot hide behind bankruptcy — the bonding company is responsible for payment.
In south Florida many people hire caregivers because a friend recommended him or her or the person had worked for another friend’s family member or its someone just in from Latin America and they need a job. It’s less expensive but it’s dangerous. If there’s theft or maltreatment you have no recourse — these people do not have the means to compensate for their conduct. We’ve all heard stories of stealing, maltreatment of the patient and overall sloth behavior.
One very well known man in Key Biscayne had in-home care for him and his wife. She died and it was just him. The home care folks started taking advantage — eating his food, taking his “change,” purchasing his food (and theirs) and only tending to him when his out of town daughter called to say she was coming to visit. Luckily, his neighbor became suspicious when he found the man disoriented and walking the halls. He took him back to his condo only to find the “helper” watching television and eating — totally unaware the patient had left. He chastised the employee, called the daughter and put an end to the in-home care.
Bottom line – you do not want your family members in the care of people who don’t care. The safest thing anyone can do is call a reputable company and pay the extra $2.00 or $3.00 an hour that a bonded company would charge.
Parenting Your Parents partners with ComforCare — not only do they have well trained caregivers but, if you qualify, they can find you free in-home care! Contact us if you need us. firstname.lastname@example.org.
BORING BUT USEFUL:
MEDICARE – MEDICAID — THEY SOUND ALIKE BUT ARE VERY DIFFERENT
Many of us think if we’re eligible for Medicare then we’re also eligible for Medicaid — although very few of us understand the difference. I am going to attempt to explain that difference without putting you to sleep.
MEDICARE: Medicare is a federally funded insurance program for “seniors.” It is available to all US citizens and green card holders from the age of 65 and higher. There are two parts: Part A (Hospital Coverage) and Part B (Medical Insurance). If you choose a simple ‘medicare’ then you also have to choose doctors and hospitals that accept medicare. (Please see my article, “Choosing Good Care Within the Medicare System”). In 2017 the Part B premium average is $134 but if you have a higher income it can go as high as $600.00/month. If you live on or close to your social security income it’s $109.00 on average.
For hospital insurance you usually pay a deductible — this can go into the thousands which is why many people choose to have a “supplemental” plan. These plans are run by insurance companies and often are free — which is an HMO. As you know, we at Parenting Your Parents, recommend PPO plans which is an out of pocket cost.
MEDICAID: Medicaid is a state administered program with some funds coming from state taxes and other funds coming from federal Medicaid grants given to needy states. (In other words, the poorer the state the more federal funds.) The benefits are intended for low-income patients who cannot otherwise afford medical assistance. To be eligible for Medicaid, you must meet a mandatory list of standards that are partially enforced by the federal government.
Again you must be a US Citizen or Green Card holder to be eligible. For the purposes of seniors, they must be in a nursing home facility or receive “home or community-based care.” Bottom line, a senior cannot have assets or income over the poverty level if they want to qualify for medicaid.
Here is the kicker – qualifying for Medicaid triggers a five year look back to ascertain that you (the senior or the child) have not recently transferred a home, bank account, and/or other assets to avoid paying for nursing home care. And this is the tricky part — when do you begin the asset transfer to children, a trust, and/or a power of attorney. And that is where Parenting Your Parents is a resource.
This is a very tough subject. In our experience parents don’t want to give up control and the kids are the prime suspects, i.e. “they want to take our money away and use it for vacations!” For the kids the hardest part is that one parent is going to go into a nursing home and you have to be prepared (unless you have more that $10 million in assets).
Bottom line — ask yourself — do you want these homes to get your money or do you want the money used for the greater good — whatever that might be. Once that question is answered, you can move forward in either direction . . . protecting your assets now or letting fate take her course.
That dreaded phone call — the one where you don’t know the person at the other end of the line and he or she says, “we’re calling about your Mother.” In this case, Mother, suffering from dementia, had pulled the fire alarm and the locks on the “locked facility” had released. She walked out onto a busy street in Atlanta, GA and tried to flag down a car and escape. Luckily, a concerned motorist called the Police who called the facility. They walked two blocks and found my mother. Until that moment no one knew she was missing. That was a wake-up call.
Dementia does not mean stupid — it simply means that the mind is forgetting. Mother, a summa cum laude graduate of American University, wanted out! She took a look at her surroundings, saw the fire alarm and pulled the lever. The problem, as you can see, is that her “protectors” are not as smart. Needless to say, we moved her out and found another place for her to live. That was three years ago. Today, she has forgotten how to walk, cannot move her wheelchair and is no longer a flight risk.
If one of your family has dementia/alzhiemers it is incumbent upon you to visit the facility regularly — this alerts the staff and the person receives better care. It’s the old axiom — the squeaky wheel gets the oil. Mother is now in a Medicaid nursing home and we are more vigilant than ever. The stories we hear of horrible abuse might be rare and extreme but they’re true. I check her legs, arms, feet, cut her nails and toenails because no one else does. Mom always has new scratches and I ask about each and every one. She can barely communicate so she is at the mercy of those who attend her.
Inform the nursing home of any issues verbally and follow up with a written document. I always email what I stated verbally.
Dad is in an assisted living facility. He has his wits about him and can communicate his needs to the staff. Still, we’ve had to watch the little things — are they washing his clothes on time, changing his sheets weekly, doing the deep cleans in his room and treating him with respect. As Dad has aged he has also lost motor skills, he is a fall risk and weaker – hence the heightened vigilance. If your parents live together this becomes much easier. They watch out for each other. However, this is an exception, not the rule.
In conclusion, the workers at these facilities care about their residents but are human. It really becomes an issue of time. In a nursing home each attendant has 16 to19 patients a day to bathe, dress and feed. The private-pay locations are more vigilant than the Medicaid nursing homes BUT they also have more employees and better paid employees. I do my best to be “understanding” but, at the end of the day, it’s my Mother and Father and no one messes with them!