Affordable Healthcare From a Caregiver's Perspective

The new health care bill is suppose to help people like my family.  How dare I, a caregiver for family members with a rare disease, be unhappy with the new healthcare system?

Let me explain.

I have been struggling with insurance companies over claims for my guys.  I get letters of denial  indicating the reason for the denial is "it" isn't an proven treatment for their condition.  Their condition is rare.  There is no proven treatment.  The only thing that can be done is to treat the symptoms as they arise.  The health care bill does nothing to stop denial of service.

My son, a former software engineer for Qualcomm, he lost his insurance in November.  He applied for new insurance with Healthnet.  In January, 2014, he developed aspiration pneumonia.  Who knew swallowing took skill!  I treated him at home the best I could, knowing that a hospitalization would devastate him financially.  Things were looking desperate as his oxygen levels began to drop.  Gray is a great new skin color... if you are a zombie!

I found an oxygen machine on Craigslist.  With that and left over antibiotics, he survived.  His new insurance kicked into effect on Feb 1st.  To our surprise, his general doctor and his neurologist, which appeared on Healthnet.com's website, are not allowed under the plan.  Nor is he eligible for Medicare until May of 2014.

I called Healthnet.  Wait an hour and seven minutes.  They can't help me.  Transfer me.  Wait again over an hour.  They can't help me. They say I need to speak to the department I first waited and talked with.  Wait again over an hour.  We have to apply for another insurance policy.  It will be another month until it takes effect.  Then we can cancel the current policy which doesn't help us.

This morning my husband had an appointment with his local neurologist.  We had been seeing one of the top doctors in the country, for my family's disease, at UCLA Medical Center. We could no longer make the long trip.  Today's visit, just down the street, brought disturbing news.

Our doctor told us that under the new health care system,  doctors will be leaving practice in droves.  When doctors work is not adequately compensated, why stay?  Why remain working for less than they can make elsewhere?  That combined with new regulations on the doctor/patient relationship adds the last straw.  No longer can doctors and patients email each other information.  The exodus didn't materialize.  Most doctors remained in their careers, but their satisfaction suffered, as did time with their patients.

So, who are these doctors who are preparing to abandon their practices?  Certainly they must not be the cream of the crop, dedicated, patient driven general practicioners and specialists!  Or, are they?  In fact, it is the good doctors, the specialists, who are fleeing practice.  Soon we will have a system of only bad doctors.

Who treats rare diseases?  Specialists.  Are we in trouble, in danger of losing our doctors?  Yes, especially these doctors who treat rare diseases, which according to the government is who the health care bill was suppose to help.   President Obama's rhetoric changed from "Every American is entitled to good health care" to "Every American is entitled to basic health care."  That means specialized care is out the door.

 Kiss your patootie goodbye if you get an unusual disease or aggressive cancer.


 If you care about people and healthcare, urge your Congressman to pass another bill to eliminate the current "health care" bill.  Replace it with a bill that simply says people are not required to have health insurance; the IRS may never have any power over healthcare; insurance companies can't drop a person for being ill and can't refuse to cover someone with a pre-existing condition.  Period.

Gifts for a Severely Disabled Person

Buying gifts for the disabled, especially the severely disabled, can be challenging.  Like "normal" people, wants vary depending on the individual.  The list of needs grows endlessly, often many of the same thing.

Free gifts:

A visit, even for five or ten minutes can lighten a homebound person's day.  Come armed with good jokes and funny antidotes.

Inexpensive (but appreciated) gifts:

One gift can simply be to send them greeting cards by mail.  There is something very special about receiving a card by snail mail.  It makes the recipient feel recognized.

  Candy is yummy, but be certain what the person really likes and can handle.  Don't be afraid to ask.  Swallowing can be a huge issue.  As in "Big Bang Theory," Milk Duds are for all ocassions, as are Ding Dongs.

  Soft kleenex tissues with aloe in a box with colors and designs the person likes.  Add a bow and it becomes a gift.

  Spray on sunscreen

  A good back-scratcher.  I found that plastic spaghetti spoons work wonderfully!

  Non-slip adhesive ducks for the tub or shower floor

  Burt's Beeswax lipbalm

  Body lotion or powder

  A good cologne or perfume

  Music or movie CDs

  Movie or event tickets

  Flowers... even men like flowers, don't let them kid you.  They don't have to be expensive.  From your garden can be just as wonderful.

One or a mountain of pillows... a variety of sizes, firm to soft, some with the cooling gel or pad, a supportive "C" shape neck pillow to a large sitting-up bed cushion

  Pillow protectors of any or every size

  Pillow cases, soft, in any of a variety of sizes

Medium Cost:

  An assortment of good greeting cards.  Keep in mind that when they send someone a card, they want it to look new and thoughtful.  Humorous cards are usually appreciated.  A couple of nice sympathy cards in the mix, although often overlooked, come in handy.

  Throw blankets in colors the person likes

  Small blankets that can be used to cover the person's lap and legs.  People in wheelchairs can be prone to either sunburn or cold, especially on their knees.  They are very useful to cover spots from dining or other accidental spills.

  Aprons with pockets.  Even severely disabled people love their cell phones, have wallets and other small items they need or like to carry.  The aprons protect their clothes when they eat, so serve a double purpose.  If you do embroidery, something meaningful to the person makes a special touch.

  Character slippers... several dozen different types are available.  My husband has tiger, zombie, hobbit, and several different bear feet.  These are wonderful for disabled people who can still go out.  The slippers are great to make people smile and break the ice to talk to the disabled person.

  An "on the door" hanger with about six large compartments to hold slippers.  These compartmentalized hangers also prevent the door from being smashed into the wall when the door opens from being hit by a wheelchair.

More expensive:

 Pedicures and manicures... I treated my husband to a pedicure, his first.  My friend and I insisted that his toenails be painted.  He protested.  We ignored his protests.  We selected two colors, one a brilliant blue and the second, a glitter topcoat.  When he was finished, everyone in the salon stood up or came over to look at his feet.  I suggested to the salon manager that he take a picture, because this could open a new market.  Real men, this one being a former fighter pilot, lumberjack, rancher and dairyman, get their nails painted.  Later, at home, he happily showed visitors his toes.  

  A really good electric razor or new blades for an existing razor.

  A good set of wireless headphones for watching television.  Be ready to set them up or make sure there is someone else who can.

  A deep tissue massage, especially one that will come to the home.

  Fans, table or standing that are adjustable and multispeed

  A personal buzzer that has a button on a necklace for the patient and a vibrating and/or noise unit for the caregiver

For disabled with their own home  (make sure you check with the person first!):

  Maid service

  Window washing service... Windows are the eyes of the home.  Beautifully clean, streak free windows makes the home feel fresher, more comfie.

  A handi-man to fix all the dings and bangs to walls and doors from wild wheelchair rides.

Aluminum or brushed steel door kicks to prevent wheelchair marks on doors.  I recommend getting ones at least 10 inches high.  These install with screws.  Be prepared to do the installation or help arrange for a handiman.

For those gift-givers who have money to burn:

  A comfortable adjustable bed

  Memory foam bed topper

  A padded headboard

  A large flat screen television, since vision can often be an issue, size matters.

  A wheelchair van, with top of the line amenities and an automatic slide out ramp, capable of kneeling.  Backup navigation, a step and captain's chair for the driver, lots of cup holders, individual adjustable air vents. (Alright, maybe that's more for the caregiver than the person!)  A wheelchair modified Toyota Sienna with the side access seat would be great.

  A Disney park vacation for the disabled person and a dozen of their friends!  Disney caters to the disabled and makes access to everything easy.

Or, a Universal Studios vacation in Florida for Harry Potter fans.

A full-time night-time care-giver or nurse... oddly enough, a disabled person may require more attention at night than during the day.

And, if money is no object, full-time care-givers for around the clock everyday.  What a wish!