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.