LAST RITES OR LAST RIGHTS?

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! 

THE BEGINNING OF THE END OR MAYBE THE BEGINNING. HOSPICE CARE – WHAT IT IS, WHAT IT MEANS.

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.

BEST CARE OPTIONS

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. 

IN HOME CARE – BE WARY, BE INFORMED

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.  hfrancesr@parentingyourparents.guru.

The Big Event – Travel Plans with Aging Parents

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.

The Emotional Toll

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.

mom and dad
H. Frances Reaves’ Mother and Father