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!
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!
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.
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.