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.
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. email@example.com.