Mysteries of the Blue Dye and Clogged Sink

In spite of getting up many times at night for Andy, I felt good by 8 a.m. I thought, “I’m going to get a lot done today.” I didn’t anticipate any roadblocks.

I barely got started into picking up and cleaning when Terry said, “Where’d this come from?”

I looked over to see Terry holding one of the soft yellow cloths used for wiping his glasses. One entire corner of the cloth was

covered in what looked like blue ink. Worse, it immediately was evident that the blue dye transferred easily. It was on Terry’s hand, which he was beginning to flail. He has a habit of moving where he touches everything within reach.

“Stop!” I said, speaking loudly so he could hear.
He continued to flail.

“Stop moving!” I said louder.

He kept looking at the cloth and repeated voiced wonderment, “Where did this come from?”

“Stop it! Stop moving! Don’t move! Just sit there and don’t move a muscle.” I yelled. “Let me get over there.”

I had to negotiate two dogs, two large pillows used as dog beds, the bed covers Terry had kicked onto the floor during the night, and his clothes, which he also had thrown on the floor.

I took the cloth from him, picking it up gingerly to inspect the odd wet stain. I took it into the bathroom to assess whether it was salvageable. It wasn’t or at least a part of it wasn’t.

“Let me have it,” he said. I want to clean my glasses.

“No! You can’t have it. It has blue dye that transfers to everything it touches.”

“But I need it to clean my glasses.”

“You can’t have it.”

“Why?”

“Because the blue dye gets all over everything.”

“How do you know?”

“Look at your hand and the counter-top.”  Both had blotches of blue dye.

“Where did it come from?” he asked.

I scanned the top of the dresser counter. A packet of blue anti-gas pills with several of the cells popped empty laid there. It was clear what had happened. Terry had popped out one of the pills, but got it in the cloth. He then spilled his water, which wetted the cloth, dissolved the pill, and released the blue dye.

I took the yellow cloth into the kitchen, trimmed off the wet stain portion, and returned the remaining piece to Terry.
He was happy and began cleaning his glasses. As I turned and began to leave the room, he said, “The sink is clogged.”

“What? Which sink?”

“The bathroom sink.”

“Our bathroom sink?”

“Yes.”

That didn’t seem possible. The sink was new with the remodel. Nothing goes down that sink, except for soap and water. How could it be clogged?

“What did you put down it?” I asked.

“Nothing.”

“Don’t tell me that. I know you did something. What did you do?”

“Nothing!” he said, protesting. Then, in a voice that reminded me of a little kid trying to come up with an explanation for some errant deed, hoping I would buy it, he said, “Maybe it’s a hair clog.”

“Why would it be a hair clog? I don’t have any hair after the chemo treatments and your’s is short.”

In the bathroom, I figured out how to remove the plug. The plug fixture was unusual, not the typical up-and-down stopper found in most sinks. This stopper required the user to push down to close and another tap to pop it up open. Removing the stopper was easy, once I remembered how, by unscrewing the plug. I could see something stuck in the drain on the drain guard. I put my finger into the drain and swept the perimeter. Instantly I felt pain. I had sliced the tip of my finger. I couldn’t see what I had cut myself on.

I went to the kitchen and retrieved a small tool I use to clear drains. Pulling out the clog, it proved to be toilet paper. 

Toilet paper! What was toilet paper doing in the sink? Terry! This was typical of Terry.  Gads, he already had thrown two roadblocks in my way and the day was just starting.

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!

Bedroom Setup for Disability

My son made it through another night. Whoo Hoo! He is completely surrounded by pillows, so he can sleep sitting up. If I threw a blanket over the top, he'd have a fort. Perhaps that's what he's going for. He clings to his queen size bed, refusing to give into a twin-sized adjustable model, while trying to avoid that "hospital" look. As his disability progresses, avoiding the "hospital" look becomes more challenging.

The setup is pretty sweet and we're getting it down. On the floor next to the bed, an oxygen generator sits on one side, the "Vest" and it's machine on the other. The "Vest", an airway clearance device, beats him, so I don't have to. Looking like a life vest, it thumps his chest and back to help him breathe. His color is purple, of course! (The vest, not him... usually.)

Three fans, one overhead, one on his sidetable, and a floor stand model at the foot. His sidetable top holds a digital clock with a large readout, a small lamp (the kind with a flexible arm), lotion, a back scratcher, his phone, glasses, a stuffed toy received as a gift. The sidetable drawer contains the small essentials: oximeter, lip balm, nail clippers and nail files, and personal treasures. The sidetable shelf beneath keeps pajamas, a stethoscope, moist wipes, and a few boxes of personal items, neatly stacked and accessible. Tucked beside the bed is a "people moving pad." I don't know the official name, but that's what I call this most wonderfully simple back saver. The "people moving pad" is quilted with two handles on each of two opposite edges. One side is soft and absorbant. The other is slick and slippery. I flop it over the edge of the bed, transfer my son, and then can pull him into the center of the bed with little effort. Beside the pillows on the bed, sits a box of kleenex, the television remote, and somewhere under a blanket used to cover his feet, his little dog.

Fortunately, both sides of the bed allow wheelchair access, although it's tight. Last night I was thinking that if the room was another 5 feet wide and 5 feet deep, it would be glorious! Every house needs a large master bedroom that can be converted for care giving.

Changes yet to come include installing a floor-to-ceiling grab bar and a new countertop that will serve as a desktop. Above the desktop, his flatscreen television serves as both a regular television and a computer monitor. We just keep working on the improvements.

Oxygen and a Tank of Nonsense

1/23/2014
This morning began as nearly typical. The previous night, like those for the past week, was spent tending to my son who has aspiration pneumonia. I guess all the sweating, over-heating, and shortness of breath, wasn't just a young man with a libido.

We are trying to keep him out of the hospital or E.R., so he won't lose his savings and house to a single bout of illness. He lost his health insurance in November. He applied and was accepted for new insurance, but it doesn't kick in until Febuary 1st, 2014. As soon as nurse friends shared my suspicions (five days ago), that he had developed pneumonia, I began treating him with Cipro. Luckily, we had some. After two doses, his fever began to reduce and the sweating decreased. He was having difficulty breathing, so I jumped on Craigslist to look for medical oxygen tanks. Knowing nothing about them, I sifted through the ads until I found one that sounded promising. The fellow had used the system for his mother, until she passed. I called, he brought the system over, since he was running errands in the neighborhood. We made a deal.

When he came with the oxygen system, he plugged it in and it worked. He warned me that it hadn't been running since he lost his mom. He also said it was overdue for service, but they had purchased an extended warranty with the unit. Originally, the unit cost $1700 or thereabouts from a company in Fountain Valley (where ever that is). Just as he was about to leave, the unit began flashing and beeping an alarm. He offered me a refund, but I said no, I'd keep it.

The next day I called the company in Fountain Valley. I told the woman the situation, asked what the light meant, and questioned if was there anyway to fix the problem. She said, "First, let's see if it was his to sell." She explained, it might be a rental or bought, but not paid off. It had never even crossed my mind that it might not be his! Luckily, it was his. He had bought it outright.

Next, she said these units require a prescription. Did I have one? No, of course not. That never occurred to me either, that a glorified air pump might need a prescription. Has this country gone crazy?!

She said that in all the time she had been working, she had never encountered this type of instance. Nobody had bought a unit, without a prescription, that someone else sold.

Is what I did illegal? I don't think so. He legally had a right to sell it. I desperately needed it to save my son. That which is necessary, is legal, is it not?

#DementiaHusband #OxygenTank

Surprises of Care Giving

1/17/2014 My husband retired from the USAF as a career fighter pilot. With 737 and Lear jet ratings in hand, he was suppose to be off to the airlines. But, fate laughed and intervened. A rare genetic disease took hold just as he retired. He lost his balance and gained double vision. He grounded himself, saying it wouldn't be safe to fly, seeing how he was losing his sense of up and down.

My son, a software engineer for Qualcomm, was able to put in nearly fifteen years of programming, before being forced to take medical retirement. He shares the same genetic disease as his dad, but has a more aggressive form. The early expression of the disease is called "anticipation."

Three years ago my husband and I moved in with my son, so I could take care of them both, since my son could not live alone. This is where the fun really begins. Having two guys, in wheelchairs, with double vision, coordination problems, numbness in the fingers, toes, and feet, and strength issues led to some interesting discoveries.

The Bathoom after Terry's Visit

The first discovery being it is difficult to maintain a house with a built-in wrecking ball! My husband drives his chair like a jet. With vision and coordination problems, he inevitably ups the speed setting to fast, faster, or fastest, by merely hitting the control as his hand flails around. He can't tell where the door opening are and repeatedly takes out the door frames. Bathrooms are another issue. Often the
commode must be re-set on its base. Four times close encounters with a low flying UFO left cracks in the porcelain requiring replacement of the entire toilet. This discovery evolved over time and was expected as side-effects.

The next discovery was that we qualified for nothing. People often ask me who I have to help. I answer, "I have three people... me, myself, and I." Not only does Medicare not provide for long-term care, but we were told my husband did not qualify for VA benefits. Let me repeat this. My husband had been a U.S.A.F. fighter pilot for 20 years, but he does not qualify for Veterans Administration benefits. We couldn't believe our ears, but then, he's half-deaf and I'm getting there, so our ears aren't reliable. How can this be?

In 2004, Congress passed a bill waging a war on wealth, placing an income limit on veterans. For us, living in Southern California, wealth is considered anything over $56,760. If a veteran saved and invested his earnings, he gets penalized. Congress is rather like the soup-Nazi, "No hearing aids or glasses for you!"

Then, my son lost his insurance. Cobra ran out and Medicare hadn't kicked in. Medicare pays for nothing in regards to long term care. Social Security will provide six months of a limited number of hours of homecare for terminal patients. Do you really think I'm going to tell my son he's terminal, at any point? My son has long-term care insurance, but it only covers two years. We have to decide what the expiration date is on the bottom of his foot and anticipate it two years in advance.

I decided to begin blogging about our family last night. In order to tend to my guys, I am swapping my days and nights. It's 6 a.m. and I've been up all night. Sleep will come in a few more hours. Last night my son decided pneumonia was a fun way to keep me up... again. Several years ago he lost part of a lung to aspiration pneumonia. For several hours last night, it was touch and go as to whether I needed to call 911. A rescue inhaler saved the day, as did the "Vest." The "Vest" looks like a water safety vest. It is designed for people with cystic fibrosis. It rhythmically thumps his chest to help him cough. Even so, he coughed little. His oxygen plummeted to 84%. We have a deal that when it hits 88%, it's E.R. time. He managed to hold mostly between 91-93% for several hours, before the number slowly crept upwards.
#DementiaHusband #VA #Medicare

Comparing Contractors for Home Bathroom Remodeling

 I begin this, my first blog, with an entry regarding home remodeling contractor selection and estimates, with a lesson in respect I learned from my son.  The following factual recount contains my personal thoughts and opinions.

Sun Coast Remodelers in San Diego cold called us trying to drum up business.  We were interested, as we needed to make a functional remodel of a house bathroom for wheelchair accessibility. As usual, we always get three quotes.  Their designer/salesperson came, spoke to us, took cursory measurements, and made an appointment for a few days later.  He was running late and called to let us know.  That was fine and understandable. The difficulty I had with this company is with the quality of the initial quote consultation, the design work, and particulars of representations in the presentation. 

The design was sketched in pencil, not detailed, but he did use a straight edge.  I was quite surprised that he didn't use a CAD program, which is a basic tool of architectural design. He explained the company works with little overhead.   The details did not show plumbing, electrical, windows, venting, and thickness of walls... etc. The sketch, approximately 2"x2", showed a room layout, which although I liked the layout at first blush and it met the general parameters of our requirements, it had some problems.  There were no internal measurements to the sketch and the general measurements lacked specificity, so it was difficult to determine how far apart fixtures and appliances were from each other.  As I contemplated his sketch, I realized the distance between the washer and dryer, facing each other as I had suggested as a possibility, were quite a bit farther apart than desired.  The distance would cause me to take extra steps.  He tried to explain that the distance was only an extra six inches on each side.  He didn't seem to comprehend that distance was critical.  When I would question a feature of his design, he would launch into a defense of how much time he had put into the design and an oral resume of his experience.

He compared Sun Coast Remodelers to Lars Remodeling and Construction, which is a local award winning, highly professional business we had previously used.  I had to agree the difference was significant.  Lars himself came to check our home and take note of all details, including plumbing, pipes, electrical, vents, foundations, elevation... etc.  When the Lars Construction designer came, he had multiple layouts, all in great detail, which he said took him little time and changed details on the spot on his laptop. 

The Sun Coast designer/salesman repeatedly told us the company had been in business 4 years and previously operated under another name.  When I looked them up on the California Contractors License Board, I discovered they had only been licensed since 11/01/2009 (today is 1/26/2012).  He said they had no complaints against them with the Better Business Bureau, and then amended his statement to say only minor complaints, which had been settled.  In confirmation, when I checked the BBB, I found 7 complaints, with 5 of them settled.  But, do I want to have to go to the BBB to settle a problem?  Why didn't the business just take care of the issue?  As a comparison, to see if that was usual, I looked up Lars Construction on the BBB website. Lars, listed with the BBB since 1996, has had zero complaints.

The Sun Coast designer/salesman showed us his estimate for the project.  Which was a few thousand less than Lars Construction had bid.  The Sun Coast man's bid listed the remodel changes to be made.  Since, by his own admission, he wasn't a contractor and when questioned about moving pipes and other issues, he said they would have to be made by engineers or the contractor, I couldn't help but wonder how he could give a reliable bid.  For comparison, the Lars Construction bid not only included a list of the remodel changes, but all the materials required, (e.g. how many 2x4s, pieces of sheet rock, tiles).

The Sun Coast Remodelers' designer/salesman told us they could start immediately, as they had just finished several large projects.  He said they could start demolition immediately.  Lars Construction told us it could take two or more weeks to begin, due to waiting for approval of plans and permits.

The Sun Coast Remodelers' designer/salesman gave an explanation of why and how his bosses allocated work time, so he was not allowed to do more design work, prior to having a commitment.  I told him we didn't want to sign a contract, yet.  He said he wasn't asking for a contract, he was asking for a commitment.  Something in the back of my mind told me that making a commitment is the same as an oral contract. (I could be completely wrong on that, because I am not a lawyer.)  I asked him how we could make a commitment, if we hadn't even agreed on a design.  He said he wasn't there to give a hard sell, he just wanted a commitment and asked if there was anything that would prevent us from going forward.  My son, very calmly and respectfully said, "I am sorry, but we have to get one more estimate."  

The designer/salesman tried to dissuade us from additional estimates and give him an immediate commitment.  In contrast, Lars had encouraged us to get additional estimates.

When the Sun Coast designer/salesman left, he didn't leave a copy of the floor plan or estimates.  Lars emailed us all the designs and estimated costs.

I cannot speak to quality of construction by Sun Coast, as we have not used them.  We have used Lars in the past and they gave us top notch quality and service after the fact. 

Please note, I am not associated with either Sun Coast or Lars, except as a consumer.  

My two cents for other people who are contemplating remodeling is:

1.  Get bids from three licensed contractors.

2.  Check their license with your state's contractor's license board.

3.  Check the business with the Better Business Bureau.

4.  Verify statements from salesmen.  If they are not accurate in statements, how accurate will the build be?

5.  Get references and contact them.  It's best to go in person to see the work.

The lesson I learned was, when I am being pressured to sign a contract, to say, with kindness and respect, "I am sorry, but I need another estimate."  For me, I need to practice it as much as when a child is repeatedly told to say "please" and "thank you."

#BathroomRemodeling #ComparingContractors