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. email@example.com.
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.
MONITORING THE MONITORS –
HOLDING THE ASSISTED LIVING CENTERS ACCOUNTABLE
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. Each time I go 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 Once she had toenails more than an inch long and the entire foot was placed into tennis shoes. (That has been corrected.) She can barely communicate so she is at the mercy of those who attend her. When you visit your family member, choose different items to inspect. Also buy moisturizer, print the family name and room number on it and place it in a drawer or shelf. Sometimes these creams go walking but I note that each time I’ve mentioned a disappearance the item is found. 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!
THE AIRPORT WHEELCHAIR – HOW TO NAVIGATE THE SYSTEM
The other day, while running in Crandon Park, I came across my friend, Lilian, whose elderly Mom is in pretty good health. Every year she and her Mother go to Santa Fe, New Mexico for mother-daughter time. This means, she, like me, needs to utilize the wheelchair services provided at airports. We’re both experts on the do’s and don’t’s and have compared notes. So, although I’m writing the column, Lilian is a great source of research. She, like many of us, is living it.
Eulan the wheelchair provider at Miami International Airport, has no competition — this means they don’t have to try . . . and it shows. When Dad first needed a wheelchair, I used to drop him off at Door #3, walk him in and sit him down in the wheelchair area. I’d make sure his name was in the book with his flight time. Then I would leave. Big mistake — basically, wheelchair dependent travelers are at the mercy of strangers. It’s as if they are cows in a pen being led to slaughter. OK, I exaggerate . . . but only a little! Too many times, a person is forgotten and are raced to the gate in a cart. Think of how stressed you are when you might miss your flight and double that feeling for someone who has no control and elderly.
That’s not all, the Eulan workforce, i.e. the wheelchair drivers, are paid minimum wage and expect tips. They don’t care about your family member, they want to transport as many people in the shortest amount of time and make money. I remember one particular scene I created when the wheelchair driver left my father alone to retrieve other passengers from other TERMINALS (not gates) to place them all in one cart! This means Dad is sitting in a chair for 20 to 30 minutes. Luckily, I was with him and that didn’t’ happen. BUT, it does happen and it happens more than it should
This is the system and although I don’t like it we must live in it. Here are my suggestions:
Ensure that you have $5.00 bills, $10.00 bills and $20.00 bills in your pocket/wallet;
Get a pass from the airline to escort your loved on to his or her gate;
If you’re a member of the American Express Centurion Lounge or an airline club, have the wheelchair take your loved one there by wheelchair then arrange for a guest services cart to take him or her to the Gate at an appropriate time — these clubs specialize in customer service. Whoever the driver is give him $10.00.
If you’re not a member of a club then escort the wheelchair and the attendant to the gate and tip the attendant well. (I do it on length of transport – the more distant the gate the larger the tip with Gate 60 being $20.00.) Give your family member the $5.00 bill and tell the attendant that it’s for him after he takes the family member to the door of the airplane. This is a little extra security — it mightn’t always work but it usually does.
For connecting flights in other airports stay with your family member. They will take them off the plane and leave them in the wait area to go get more folks off the plane. That’s when you pull out the $5.00 and tell them you have a connecting flight and need them now — ask them to call a peer to retrieve the other passengers. When you arrive at the gate — another tip.
Yes, it costs money but its the best way to work within the system and have peace of mind. If you have other suggestions please let me know. If you can’t don’t have time to do this for your family members, call us at Parenting Your Parents — yes, a little more expensive but you still have peace of mind!
This occasion has been in the making for over a year . . . family is coming together and it’s a happy, happy occasion. The entire time your parents have been part of the plans . . . where they will sit, what they will wear . . . And now, it’s a month away and Mom is unable to travel because of her dementia and Dad a little weaker from a hospital stay. Often the kids make the decision — they cannot come. But wait, why not??
Again, we as the children have to ask the question, is it because we don’t want to be bothered or is it because Dad simply cannot handle the travel? Our company says: ask Dad! If he says yes, here are a few suggestions:
You want to avoid having your parent travel alone. We say, hire a traveling babysitter. Depending on your parents health, the person can be hired for both or one.
Why a babysitter? First, the airport mania is overwhelming. There are wheelchairs available but someone must supervise the attendant. I’ve seen seniors left by themselves while the attendant goes to pick up more passengers to fill up a terminal bus. That is not how my parent is going to be treated and nor should yours.
Secondly, the airplane ride. Will they need help getting to the restroom? Are they in an aisle seat where it’s easy to get up and down? What about getting those headphones in the ears so the show can be watched?
Thirdly, landing. Yes, the airline will have the wheelchair waiting but it’s a strange airport with all the chaos of any large meeting space. The babysitter adds calm to the chaos and supervision to the wheelchair attendants.
Lastly, the party! No one family member wants to go to take Dad to his room and skip the rest of the party. Nor is it fair to have a family member in charge of dinner, getting the elderly to their table . . . etc. Think of how much you’ve already spent on this party. What’s a few more dollars if it means your parents/grandparents can be in the photo? The memories last you a lifetime.
So yes, there are options. The babysitter costs money but helps to prevent resentment. At Parenting Your Parents that’s what we do — make certain that your family event is a family event with minimum trauma.
You walk into the lobby and take a deep breath. How did you get here? Why is this necessary? How did my very competent ‘elders’ all of a sudden need assistance living? Other questions pop into your head, will they be happy here? Will they be fed well? Will they like the people here? Whether you’re 40 years old or 80 years old — these are real moments. Change is coming and it seems to be screaming down the train track right at you. Do you jump or simply lie down? Before you decide ask:
- Do the elders want to live near family or friends? If both are in the same location the question is moot. Otherwise, this question comes first. It’s not about YOU as the child it’s about your parent’s quality of life. We all think Mom and Dad should be close to us, family, but that’s not necessarily what THEY want. If they have a life in a separate location and want to stay, keep them there. Today, with UBER and LYFT the ability to drive is not a necessity.
- What is your budget for a senior care center? Certainly this makes a small difference in the food or housing (food and maintenance are fairly comparable) but the big difference is location. You ask yourself — how long will it take to get them to their synagogue or church? How far is it to their favorite restaurant? What other bills will need to be paid?
- How much money is there? Can Mom and Dad afford this on their own or are will the kids have to assist financially? What other sources of monies can be tapped? Are there VA benefits? Widow/widower benefits? Can social security disability come into play?
- Can this facility be trusted? We’ve all heard those horror stories of badly treated seniors and none of us want that happening to our parents. There are many resources and most of them are online. You can look up assisted living centers and many will pop up — most with ratings right next to the name. There is also AARP ratings, YELP ratings and Facebook.
Bottom line: You will have to do some searching — online and in person Peace of mind is what you want in any location. As the children you want your parents well treated — as the residents you, too, want options in food, activities and people. The most important aspect of this is that you and your parents feel comfortable and secure.
Our company, Parenting Your Parents takes no fees from assisted living centers. Our concern is you and we want the option of defending you against them — which can sometimes happen.
NOTHING prepares you for your parents aging. Our company can assist with the financial scams and pitfalls but you’re the one who has to watch Mom, Dad, Grandma or Grandad age and weaken. It’s heart wrenching! I write this column as a daughter who has a demented mother (87) and a weakened , non-driving father (93).
Mother is in a nursing home. This nursing home has an excellent reputation and a low employee turn over rate but it’s still one of those places where the halls are filled with moaning people in wheelchairs or portable beds.
This home charges close to $7000.00 a month but accepts medicaid. This means we had to impoverish Mom. By “impoverish” I mean I had to do the paperwork to make her medicaid eligible. We now pay a little over $700.00 a month. I do not have the words to detail the pain . . .humiliation that I felt in using my legal education to make my mother poor enough so she could live with other poor people in her old age. This is not what she wanted nor is it what we wanted. However, Dad is lucid, Mother is not — we couldn’t afford both and neither could they.
Each time I visit Mom I cut her nails, take off the old nail polish, pay for a weekly hairdresser. rub Lubriderm on her skin and place vaseline on her lips. It kills me to leave her although I know in five minutes she won’t remember I was there.. But, there is a silver lining, Mom and I were oil and water as I grew up. We simply didn’t get along. Today however, it gives me great joy to minister unto her — to do little things that allow her to feel special and loved. She always has tears in her eyes when I say goodby and so do I BUT (and this is important) I know when she dies I’ll have done all I can. For that I’m grateful.
I am a “Daddy’s Girl” so watching him weaken is difficult. On one hand I’m so grateful that he has a quality of life that allows him to live alone in an assisted living facility but I still have to cut his nails, hire a barber, and cajole him to use his walker. I accompany him to the 3:30pm weekly Happy Hour when I’m in town but I see his failure to thrive. Who can blame him? He lives in place with lots of old people all of whom are simply trying to get through the day. I know Dad is ready to leave us — I don’t want him to but I know he’s tired of growing old.
And let me end this column by stating that as hard as it has been for me I am once removed. My father chose to live in Atlanta where my brother and his family reside and Matt has had to deal with the day to day. Matt is more stoic but he’s also the baby of the family — and this is a true role reversal for him. He does a phenomenal job and I’m grateful.
To make it a bit more personal I’ve added a photo of Mom and Dad before dementia took hold and we had to take over.