Friday, December 24, 2010
Thank you all for your notes of concern...all is well. All my tests showed no sign of cancer and my eye surgery was called off, AGAIN! Despite the stars and halos (according to the insurance company) I am supposed to be able to see fine with correction (glasses.) I disagree, but there is nothing I can do until the cataract matures to the point insurance will agree to pay. I am 20/70 in my left eye, but 20/25 with correction according to my favorite doctor Stella Kim. I just love her. Is it possible to have a school boy crush at my age?
I had a little set back while in Houston. I was given a free hotel room for the week arranged by the American Cancer Society. It turned out to be more trouble than it was worth. I had planned to post all during my trip, but the chain of events left me with little time and too weak to manage. To sum it up, cockroaches, no heat, a broken water pipe in the bathroom that flooded my toiletries. After moving to a second room, I found another cockroach which I captured and marched down to the manager prompting a full floor extermination. Then, to top it all off...I got food poisoning compliments of the hotel's over priced restaurant which caused me to extend my stay until I was well enough to fly. If there is anything I can't stand, it's a poorly run restaurant! Enough said!
I have been very busy and much has happened since I went to Houston. Quick overview: Before I left I had another wonderful dinner with my nephew Matthew and his lovely girlfriend at Claim Jumper's in Fremont. Matt and his girl are both strict vegetarians. This made it difficult for them to find something to eat. They don't even eat butter or allow their foods to be fried in oils that might have been used to fry meat products. That's really too bad because I made up for the both of them and ordered steak and lobster. WHAT? I'm a carnivore and make no apologies for that. Are you honestly going to say something after I spent over 2 years on a feeding tube? OK, maybe I'm milking that a bit, but seriously I would eat anything after that!!! Butter the living room rug and serve it up, I'm game! Hey Maureen...WHERE'S MY YAK BURGER? HUH?
Christmas Eve Traditions
I wanted to play secret Santa early this year. Every year I gather blankets for the homeless and usually after midnight on Christmas Eve I head out to the city and quietly cover those sleeping in door ways. This was something I began doing 20 years ago when I had a eye opening experience that changed how I viewed the world.
I had gone to dinner at Ernie's on Montgomery Street in San Francisco. This was THE most luxurious restaurant I had ever had the pleasure to dine in. The service was impeccable and the food outstanding. It was on the high end of the price range. The famous mahogany bar with its intricate, stained-glass back was carved from a single tree, the walls were covered with maroon Scalamandre silk brocade, magnificent crystal chandeliers hung above the main dining area. The rooms were adorned with antiques from some of the greatest mansions of San Francisco. Ernie's had the distinction of receiving 32 consecutive 5 star awards and Alfred Hitchcock chose the restaurant to be featured in his film Vertigo. To say this establishment epitomized fine dining would be an understatement. Ernie's open around the turn of the 20th century, but sadly closed their doors in September 1995. I was honestly crushed. I have NEVER had a fine dining experience of that caliber since then. In fact I aways wanted to own that type of high end dining establishment.
That night I popped for $120 meal and was driving home in my new convertible Corvette. I was on top of my game and thought nothing about spending that kind of cash for a meal. I had everything a person could ever want monetarily speaking.
As I drove through the city I noticed an unusually large amount of homeless people sleeping under large pieces of cardboard and tattered rags, huddled in doorways trying to sleep on the cold cement stoops of homes and shops. It hit me hard how unfair life can be and how awful a life like that must be. I had everything and more and they had a cardboard box for comfort without a roof over their head.
I stopped the car and stared at one old man as he shivered before me, curled up in a ball alone. I thought, "That could be me someday." I remembered I had a blanket I just purchased that afternoon for my spare bedroom. There was nothing to think about. I grabbed the new blanket, got out of the car, and quietly shrouded an old bearded homeless man as he slept. I didn't wake him. I crept away and thought, "I need to do more." As I drove home that evening I promised myself I would begin to collect clean, used blankets from any source and every Christmas Eve I would drive into San Francisco and play Secret Santa to the homeless. I usually collected so many blankets that I needed to rent a van to deliver the tidings. It was my way of giving back. I would usually send out a press release for such an event because I was a media whore in business, but this was personal and it felt so good to do it without any ones knowledge. It felt DAMN GOOD!
For years I did this until I became very ill for the first time in 1995. After that it was hit and miss although my company was involved in helping Glide Memorial feed the homeless and sponsoring the Easter Seals Telethons. I made sure there was always some charity we were giving to, but nothing has ever felt better than playing Secret Santa!
My last night in town before I headed out to Houston for my annual cancer check up, I couldn't find enough time. I wanted to buy a dozen blankets and make an early Secret Santa run. It doesn't seem give me the same feeling unless it's Christmas Eve, although I know sometimes it's the only way I can accomplish it. There's something about doing it on that special night that just knocks it out of the park and makes my heart pound with joy.
From Houston I continue my tour to the Sunshine State. I won't be back until February as I will winter somewhere warm. So tonight I will spend a peaceful evening alone after an exhaustive 3 weeks. Tomorrow I will be one year older and wiser (I hope.) When I reflect upon the past, it was good...damn good, the future...well..that's not written yet.
I'm still contemplating on auditioning for America's Got Talent in February. I've rolled the idea around and thought how cool it would be to inspire others who might be about to give up on their cancer fight as I once wanted to, to give hope to those who might be wavering. Having a positive attitude and a will to live is more than half the battle.
And I think, if I won, I would donate all the money responsibly to cancer research at my discretion. Besides, I'm not doing it for the money, I want to inspire and give hope and maybe a little shock and awe. After all, who would expect a man that lost his tongue to cancer to be able to sing? My vocals are getting stronger and I think even if I didn't make the cut, it would be fun. My biggest concern is whether or not I have the stamina for it! I'd need a team of helpers for sure and maybe a wheel chair standing by. I'm really not sure what to expect. But then that's life in a nutshell...we never know what's just around that corner do we?
It's time to settle in with my hot cocoa, a roaring fire, and watch It's A Wonderful Life. I need my wings! Anybody here a bell? Yes, life is wonderful...tonight let there be peace on Earth.
God bless you all, Merry Christmas!
Friday, December 10, 2010
Last night I spent a very special evening with my friend Isabel. We have always enjoyed dining out together. It's kind of "our thing" and it is always best when you can spend one on one time without a whole gang. Better bonding time. It's more personal and you can connect and better communicate. Although Isabel and I don't always see the world the same way, (we drive each other crazy
As you already know, I'm still here! My speech is remarkably improved and I can consume almost anything with minor modifications. I'm still scarred and I have issues with pain, but at this point it's manageable. My biggest issue, aside from the pain and fatigue, is the traumatized fat lower lip I have been left with after my mouth was filleted open to remove the cancerous enemy within.
Happy Holidays Everyone!
Tuesday, November 30, 2010
I'm already getting nervous. In two weeks I will be back at MD Anderson Cancer Center for an annual check-up; CT Scans, blood work, X-rays! Yippee! Plus as an added bonus, I'm going to attempt to have eye surgery, AGAIN. Last year my left eye wasn't deemed bad enough for insurance to pay, so my surgery was canceled. This year we try again. I still can't see out of it. Everything is a blur with halos, stars, and muted colors.
I'm really wondering what the screening process is like at the San Francisco Airport. You hear in all the media it's very invasive. I guess for a lonely guy that's not a bad thing. Maybe I'll go through a few times just to make sure they didn't miss anything. It will be the closest thing to a date I've had in a long time! Who would have ever imagined that buying an airplane ticket could get you to second base?
Do you think if we are attacked again, we all might get lucky and TSA will impose a 3rd base rule?
Hope you all had a great Thanksgiving!
Monday, November 22, 2010
His name is Karl Dimachki, and today he is my hero! This guy, after having a neck dissection and half his tongue removed, had the guts to stand up and prove to no one else but himself, that he could still sing!
He appeared this year on Australia's X Factor. I am so inspired! Anybody want to sponsor me for America's Got Talent? I'd at least get the sympathy vote from Sharon Osbourne. I'm ready to rumble!!!
~ Karl Dimachki
Thursday, November 18, 2010
Friday, November 12, 2010
The picture above shows two human cancer cells sitting next to each other just before they're about to divide into four cells. They're derived from the now famous "HeLa" line of cancer cells, which were taken from Henrietta Lacks in 1951 and used for medical research without her permission. Henrietta was a cervical cancer patient who died in 1951 from her disease. The HeLa cell is termed "immortal" because of its unlimited ability to contiue its reproduction. It's amazing that something so beautiful can be so deadly!
Thursday, November 11, 2010
Tuesday, November 2, 2010
Today the State of California will attempt the passage of a law legalizing "Recreational" Marijuana, with Proposition 19. In 1996 the state legalized the usage of “Medical” Marijuana targeted for use by those who suffer from cancer, glaucoma, and HIV. Some patients actually find relief when taking this for a long list of ailments. Others that use the drug for recreational purposes might refer to it as pot, Mary Jane, weed, 420, Maui-wowie, bud, grass, reefer, rip, Acapulco Gold (or Red), cannabis, smoke, wacky terbacky, dope, joints, hemp, TJ, golden leaf, or ganja and so much more, as well as a long list of other names used when teamed up with other drugs.
My company employed over one hundred workers, most being between 16 and 25. I tried to keep up with all of the marijuana terminology in an effort to stop it from entering my restaurants. I had a built in nose for the pungent smell, so very few employees ever got away with bringing it to work or being high while working. I always had a policy; I don’t care what you do on your personal time, but if you bring it to work or come to work with even the odor, you were either fired or suspended. In California it was ALWAYS a problem.
Myth or Miracle?
I’ve always been a non-smoker. I can’t stand the smell of any smoke product. I'd go as far as saying I have an allergy to it. The older I get, the more sensitive I seem to become. As a child I was exposed to heavy second hand cigarette smoke. My doctors have speculated that this could be the reason for my cancer, since I don't fit the typical profile of a tongue cancer patient. I do have many family and friends who partake in “mowing the grass.” Even my mother tried it.
I don’t consider myself a prude. I’ve always said if I smoked cigarettes, I’m sure I would have tried pot already. I was surrounded by "tokers" in high school and at parties we would sit around and pass a joint. My friends respecting my decision passed it right by me knowing I wouldn’t smoke. Now with cancer, mouth and neck pain, added to chronic back pain, I am a candidate for medical marijuana without a doubt.
I take enough Vicodin to warrant trying the green herb, but have always had an aversion to putting any kind of smoke in my lungs. After mom died a buddy came by for a visit. He knows my situation and the pain I’m often in and offered to “smoke me out.” I felt it was time to see what the hubbub is about. I'm going green!
After taking a BIG hit, which I coughed immediately back up, I relaxed and tried again. It left a burning sensation in my throat. After a half hour of being "baked" at "420" I was sleepy, comfortable, and mellow. I proceeded to bed expecting my pain to diminish, but it had not. It left me relaxed and cozy, but the pain was still there. I began to wonder if the whole “legalize marijuana for medicinal purposes” was a crock.
Not only did I find putting smoke in my lungs deplorable, but the smell was just overwhelming for me. A relative suggested I try cooking with it and it would work better for me that way. I guess I could create a Pot Pizza. The more you eat, the more hungry you become. Just ask for the "special topping!" How about a Bud Burger or a Maui-wowie Souffle? What a great way to increase business at the restaurants!
Now I have to wonder...Does this drug actually help people with chronic pain and lasting disease or is it just propagated by druggies who want to convince the general population that this is a safe and effective alternative to manufactured drugs?
Fourteen states and DC have legalized “medical marijuana” and now California will lead the way legalizing it for recreational use, if Prop 19 passes. I’d like to see the statistics on how many people (government officials) ran to their doctors for a prescription after it was legalized this year, in Washington DC. And you ask what’s wrong with the politicians in our country??? You can only imagine why it takes so long to get congress to act.
Allegedly overheard during a "Joint" Session of Congress: "Dude, you gotta bill? Yeah man, ya wanna hit it? It's a real fatty. Gotta be blunt...I added a lot to it, real heavy special interest stuff! Dude, pass that bill this way. It's a Colombian bill bro. Is that something to do with immigration? When do we eat?" Now we can really refer to them as a political “party."
Has this actually become a political issue just to garner your vote? With the November elections comes a new slogan “Just say NOW to Marijuana.” When asked how the party can get first-time Obama voters to show up this fall, the 78-year-old chairman of the California Democratic Party, John Burton, gave a one-word answer: “Pot.” Indeed, polls indicate that legalization could lure Obama voters to the polls like no other issue.
Pot is already big business in California creating a $2 Billion dollar medical marijuana industry. Some estimate that this could be one of the states biggest cash crops estimating over $14 Billion dollars in revenues. Others estimate $1.4 Billion dollars could be generated in tax revenues alone. This would also result in a savings of tens of millions of dollars annually to state and local governments on the costs of incarcerating and supervising certain marijuana offenders. This will create the second California Gold Rush for business entrepreneurs. Just think of the franchise opportunities!
In Oakland, Richard Lee, founded Oaksterdam University in 2007, a trade school that focuses their curriculum on the cannabis industry. I guess this is the best place in the country to seek “higher learning.” I wonder what Yoda would think? Maybe that's why he talks so strange...hum. He did appear to be stoned in Star Wars.
"Around the survivors a perimeter create. When 900 years you reach, look as good, you will not." ~ Yoda
The “mother-ship” is located in downtown Oakland, with a 300,000 square foot campus complete with classrooms, auditorium, and grow labs. There are satellite campuses located in Los Angeles and Flint Michigan.
For a fee of $250 you will receive 12 hours of instruction. The advanced course of 32 hours will teach “Methods of Ingestion” and “Cannabusiness 101.” They also offer a comprehensive “hands on” semester in horticulture. For those of you that over water your house plants, this one’s for you. They don’t dispense, they only teach. Really? REALLY?
Is all this really necessary? Do we now need an education to get stoned? Wouldn’t it be cheaper to just subscribe to "High Times” magazine and grow your own? I just don’t get it. As a chronic sufferer of pain and having tried it myself, I think the whole “medical marijuana” issue is just another excuse to make money, push political agendas, and get high. It's not medicine! Just legalized for what it is, a recreational drug, but don’t cloak your agenda by using it as a medical option for people like me. It’s just an excuse to legalize stoning! How much longer before we all go to pot?
States that currently allow the usage of “medical” marijuana: Alaska, California, Colorado, Hawaii, Maine, Michigan, Montana, Nevada, New Jersey, New Mexico, Oregon, Rhode Island, Vermont…and DC
UPDATE: Proposition 19 did not pass, with a strong 54.9% NO vote.
Friday, October 29, 2010
Anybody home? Guess I’ve been away longer than I realized. Things have been so crazy on this end just trying to keep up with everything…and you know what they say: “If you don’t have anything nice to say, don’t say anything at all.” Guess I’ve been a little grumpy lately.
After mom died I spent the summer trying to get her house cleared out and ready for sale. It’s been on the market for months and the added responsibilities and expenses are not always easy to deal with. It’s all very draining, emotionally, physically, and monetarily. I am starting to see the dust settle and I’m feeling better with more energy than I have had in months.
I want to thank all of you who have posted and sent emails wondering how I was, THANK YOU! I guess for me it was easier to pretend cancer wasn’t a part of my life while I dealt with some of my life’s other realities.
TRICK OR TREAT!
Last year my mom so badly wanted to hand out candy for the Trick or Treater’s. I just didn’t think it was such a great idea to be exposed to so many people with both of us not being well. But mom was insistent and so I brought Dr. Swill to life with mother as my patient and that would be our Halloween costumes.
During the evening a little boy dressed as Superman approached mom on the porch with a puzzled look on his face. In a very serious tone he asked me, "Are you a real doctor?"
"No." I said, "Just a pretend one."
Then he asked mom, "Are you really sick?"
"Yes," She replied "I'm really a very sick patient."
Without hesitation he jumped at me pointing a finger, "You shouldn't go around pretending to be a doctor. Doctors help people. She needs a real doctor now and you can't help her!"
For a brief moment I almost forgot it was Halloween. The situation became too real. All pointed out by a pint sized Superman with an attitude. SNAP! Mom asked sweetly, "Don't you want any candy?"
"Sure!" he growled as he disapprovingly scowled at me. His father, standing behind him just shrugged his shoulders and smiled as I smartly quipped, "Your son's going to be a great lawyer someday." (Anybody know where I can buy some kriptonite?)
This year sadly, I’m not in the mood to play doctor or greet goblins so the lights will stay off and I’ll watch a scary movie with popcorn. I just don’t think it would be any fun. Next year I promise to set up a killer haunted house and have some fun.
Friday, March 26, 2010
the subtle difference between
holding a hand and chaining a soul
and you learn
that love doesn't mean leaning
and company doesn't always mean security.
And you begin to learn
that kisses aren't contracts
and presents aren't promises
and you begin to accept your defeats
with your head up and your eyes ahead
with grace, not the grief of a child
and you learn to build all your roads on today
because tomorrow's ground is
too uncertain for plans
and futures have a way of falling down
After a while you learn
that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone to bring you flowers.
And you learn that you really can endure
you really are strong
you really do have worth
and you learn
and you learn
with every goodbye, you learn...
© 1971 Veronica A. Shoffstall
The phone rings. I remember looking at the clock, seeing 6:00 and thinking …dang I must have fallen asleep in the afternoon and I need to make dinner. As I drew the phone to my ear, a women softly says, “Mr., Walin, your mother has just passed. I went into her room at 4 AM and she was sleeping comfortably, but when I went into her room five minutes ago, she was gone.”
“WHAT? WAIT? She died? She’s dead? She was only there to control her pain meds.” I was confused, it was actually 6 AM. I’m in shock. The nurse says, “Take your time and drive carefully, please don’t rush.”
My mother just died…I began to cry. My first thought was to call my cousin for help. “There is no way I can do this alone. PLEASE come with me,” I beg her. Within 20 minutes my cousin was there and another 35 minutes we arrived at the Hospice Center.
Mother was still in the room she was so impressed with, looking as though she was quietly sleeping. A foul odor filled the room as we entered. I thought, “Does a body begin to smell so soon after death?” Then it dawned on me, the odor became familiar. I asked my cousin to leave the room for a moment.
“Why? What’s wrong?” She asked. “Just give me a minute and leave the room.” I said in a half angry tone.
As she left the room, I put on a pair of rubber gloves and inspected mother’s colostomy bag. It was full and I mean brimming full! I sent four replacement bags with mom when she went to Hospice House. When I located the spare bags, none of them were used! They had not changed mom’s bag in 4 days - 4 DAYS! I was fucking pissed. “HOW DARE YOU TREAT MY MOTHER THIS WAY!!!!!” my mind said as my grief turned to raging anger.
I removed the overflowing bag, cleaned mother up, and attached a clean bag. I was so angry, I stormed down to the nurse’s station with my arm stretched out, bag held high above my head filled with mother’s steaming excrement, and angrily barked at the nurse, “DISPOSE OF THIS!”
The nurse gasped in horror when she realized what I was holding and apologetically said, “We would have taken care of that for you!” To which I angrily snapped, “I would have thought you would have done that BEFORE we got here. You had an hour to do it. I need air freshener NOW!”
After this issue was attended to we were left alone in the room with mom. In fact, it was a very long time. For the first time in 8 years, I was sitting in a room with my mother in peace. Pure silence engulfed us, no oxygen generator surging, no blaring TV, no loud nebulizer, not a sound. She looked so peaceful, almost happy. Her skin looked beautiful and her color was good.
My cousin and I spent hours with mom, talking about her and holding her hands. She honestly looked good. You would have never known she was dead. It was so very strange.
I sat back on the couch. As I tearfully viewed my mother so peacefully at rest before me, I finally realized what I believed she was trying to tell me the day before. She kept repeating the word, “Wood.” I couldn’t understand why.
As I stared at the bed, I realized it was made of wood. Even though it was an adjustable bed, it looked like fine Scandinavian furniture. There were 4 tree trunk wooden posts that supported the bed, no wheels, no bulky rails, no metal in sight. The sides were trimmed in wood and the bed appeared to be an oversized, perhaps a full size. This was not a hospital bed. I realized this must be what she was trying to tell me. I would have this in my own home. It was beautiful.
I wondered why we were left alone for so long. I was waiting for someone to come in and tell us what to do next and the staff was waiting for us to finish saying good-bye. Mother stayed warm for 4 hours, and looked as if she was only sleeping. Her fingers were nimble and her color looked normal. But when she began to feel cool, I couldn’t take it any longer. I was done with my goodbyes and it was time for the next step.
I went in search of an employee and asked, “What do we do now?” She asked what her plans for internment were. “Mom wants to be cremated and buried with the family in Michigan.” I explained.
“Well, which crematory are you using?” She kindly asks. This was a subject brought up two weeks ago by the visiting hospice Chaplin, who promised to give us some local options. Another ball dropped by this hospice group. He never got back to us.
After being given 3 options, we made a decision. Within 20 minutes mom was removed from hospice, draped by a royal blue crushed velvet blanket. This would be the last time I would ever see my mother.
To save time and understanding how I emotionally handle issues like this, we immediately head over to the crematory to make all the arrangements. I have always had a delayed reaction with my feelings. I’m fine during a major issue, solid as a rock some say, but give me time to think about it and allow it to sink in…well then I fall apart and often become a major mess. So, this had to be done now, today, while I’m in my “take care of business zone.”
I know mother was going to die, but 4 days ago she was flipping through a Pottery Barn catalog to buy furniture and only went to Hospice House to “regulate” her pain medication!
This all happened too quickly. Perhaps for the best, but I can’t help thinking mistakes were made, people were irresponsible, and I was just too tired to keep up with it all. I did the best I could, given my own health issues.
The nursing home failed to send mother to the hospital when she requested. She was wrongly sent to the hospital on a “non-emergency” and redirected to a hospital that was unfamiliar with her case history. Then, hospice failed ME miserably. But, to be fair they did take good care of mother with the exception of not changing her colostomy bag, which I will never forgive them for.
When I finally unpacked mom’s bag that was sent home with all of mom’s personal effects, I had a good long cry. The Valentine’s Day card and huge heart shaped box of candy were never opened. It broke my heart.
I have been asked by a few people why I would air such a personal story for all to read. It was actually moms’ idea. When she was in the hospital, just before she agreed to hospice, I took a picture of her in her hospital bed.
She asked me to make a video for my blog. When I asked, “Why would you want me to do that?” She responded by saying, “If I can save just ONE person and get them to quit smoking, it would be worth it. I know I did this to myself, but smoking killed me and my second hand smoking might have caused your cancer. I want people to learn from my mistakes.”
I love you momma, rest in peace.
The circle of life continues...another is born.
I can still hear my mother saying, "I gotta pee!" Benjamin Franklin once said, "In this world nothing can be said to be certain, except death and taxes." After watching this video and seeing the circle of life beginning anew, I'd have to add... "and ya gotta pee!"
Friday, March 5, 2010
Friday - February 12, 2010
Mom is doing really well, but I am exhausted. A Hospice nurse, Trisha calls and informs me that mother’s paperwork was not properly filled out and she would like to swing by the house and take care of the matter.
When she arrived I expressed my disappointment that I am not getting any help with my mom. I was told they were a large organization with a lot of resources and I would get plenty of support. I was told on Wednesday a volunteer was finally scheduled to arrive on Saturday, so I could get out and get some grocery shopping done.
Trisha expressed her concern and called the office to verify the volunteer would indeed arrive tomorrow. She was informed the volunteer could not make it. This angered me. When were they going to tell me? Hospice sucks!
What gets me the most angry is that I have resources to help. Mom's long time nurse is waiting to return to work. Mom has used private care giving services in the past. They aren't cheap, but they are available with one phone call. We haven't called in the troops because of all the promises of all the help and support we would be given by hospice.
I've explained countless times...I'm sick myself. I don't know anyone here and the family is non existent at the moment. I'm doing this alone, at great risk to my health, and I need help!
I'm learning a very good lesson: Always cover your ass and if the promises come through, you're just further ahead. Hum... That's one of the first rules of business...I've already learned this lesson many years ago. I can see I'm not thinking clearly enough right now or maybe I've just heard so many great things about hospice, I really believed in them.
When my aunt died in my arms of cancer many years ago, hospice ruled. They were well organized, plentiful, and in her home 24 hours a day. They were so helpful, I almost felt useless. I guess that's why I thought this would be no different. I was wrong. I should have called in my own staff from day one!
Mom has been reading her mail and awake most of the day today. She's been more talkative than usual and has even taken the time to talk to several family members on the phone, giving all her latest news. Trisha asks mom what her pain level is on a scale of one to ten, a question repeatedly asked. Mom answers swiftly, “Five.”
“Oh that’s not good.” Trish replies. I try to explain, “Mom’s five is your two, her eight is your five and if she says ten, she is really in pain…AND if she knows the "candy man" is coming, the number will rise.” Mom is an addict with good reason, but an addict nonetheless. She has been on such heavy doses of pain medication for so many years, she calls Tylenol, M&M's.
I have been cautious to find the right balance that keeps her pain to a minimum, but not over medicating her.
Trish asked mom if she wanted to go to the Hospice House for 2 or 3 days to get her pain medicine regulated and then she could return home. This would allow me a few days recovery, the ability to get some shopping done, and give some time to myself.
|Mom's Medication Shrine|
It sounded like a good idea, mom agreed. Trish ordered transportation and then completed the paperwork. I had arranged for a much needed massage at 6 PM and was promised that mom would be at the Hospice House by 5 PM so there should be no problem keeping the massage appointment. I packed up an overnight bag for mom complete with directions, all her medications, a spreadsheet of how they are administered, and a four day supply of colostomy bags.
Well you guessed it…the massage therapist arrived to set up and mom is still here pouring over a Pottery Barn catalog, looking for bedroom furniture. I’m not really sure what she must have been thinking. The phrase, "You can't take it with you" comes to mind.
Transportation arrives…who wants a massage anyway?? Dammit nothing goes to plan. They had three hours to get here! They prepare to move her from her bed to the transportation gurney.
One of the people was a young woman small in stature. Mom begins to get testy. “You can’t handle me. You’re just a little girl! You're not strong enough! I don’t want you to drop me! Brian, help them or get someone else.” Mom complains. The young girl responds with a smile, “Don’t worry ma'am, I can handle you.”
I explain to mom that the young lady is a professional and she and her male partner know exactly what they are doing. Mom has her doubts.
With one quick swoop mom is shifted effortlessly onto the gurney and mom exclaims pointing to the young lady, “You’re hired!” Mom was pleasantly surprised and we all laughed.
As mom is rolled out of the family room, she hands me the Pottery Barn catalog and points to a dresser, directing me to order it for her. In disbelief I choked out, "I will, when you come back home momma.”
I’m on the massage table pretending the last 10 days never happened. It was heaven and so very needed.
The phone rings as I’m still on cloud-9 from my deep tissue workout. It’s mom! “Brian, you have to see this place. It’s beautiful. There are heartfelt sayings on the walls. It’s so tranquil here. My room is huge, with a dining table, a wall unit with TV, a large couch, a comfortable recliner, and a beautiful bed!” She made it sound like a suite at the Ritz.
“Mom,” I responded, “You make it sound like a resort. People go there to die!” She continued with, “Do you want my phone number?” She was really enjoying this. I had to chuckle as I said. “No ma, I know where you are. I will call you tomorrow.”
Saturday - February 13, 2010
This day never existed to me. I slept through the entire day, right through the next morning. I didn’t eat and don’t even remember getting up to go to the bathroom! My body finally gave into the much needed, uninterrupted sleep.
Sunday - February 14, 2010
I awoke to the disbelief that I slept through all of Saturday! Since it was Valentine's Day, I had to get a BIG traditional heart shaped box of candy and a card for mom. I arrived to the Hospice House bearing gifts. Mom was right, the establishment was peaceful and well appointed. Her room was located at the end of the hall and was even larger than she described. Each room was given a theme and mom's was "Listen." Scrolled above her bed was the phrase, "Listen with your heart and you will understand."
|This was written above Mom's hospice bed|
The hospice nurse explained that mom just had a bath and her hair was still damp. With her hair trimmed and freshly painted nails I did for her on Wednesday, she looked good, but something just wastn't right.
The temperature of the room felt cold to me. Mom was sitting up in her beautiful bed. On the tray table before her was the most expertly prepared meal. It was presented and appeared as appetizing as anything you’d find in a five star restaurant. I was VERY impressed.
Mom spotted me and said, “I like your sweater.” “Thanks mom, you’ve seen this before,” I responded with a puzzled look. There was a very strange look on mom's face. I was facing her, but it was if she looked right through me. It was a glassy, expressionless stare without blinking.
The nurse began to cut her meat and I said, “You better not expect me to cut your meat when you get home. Don’t get used to this.” Normally I would get a smartass response, but my comment was met with that cold stare.
I sat at the dining table watching her begin to eat her meal. She stabbed a piece of meat…and pressed…and pressed…and pressed. She pressed so hard, she bent the talons of the fork!
“Mom, you’re stoned!” I laughed
She looked up at me, fork swinging in the air as if she had Parkinson's and proudly announced with a big smile, “I’m on dope!”
“You sure are.” I chuckled, a bit concerned.
The fork waved in front of her face. She was shaking. I asked if she was cold. I got a very quick whisper, “Yeah.”
I draped her blanket firmly around her neck as she began to chew…and chew…and chew. I stared in amazement. She chewed that one piece of meat for ten minutes, maybe longer. “Are you going to swallow?” I asked with concern. No response. “Mom, you are absolutely stoned!” I said and again no response.
I went down to the nurse’s station to complain about the cold room and insisted on seeing mom’s med list. I was told by an aid they were unable to adjust the room temperature and because it was a Sunday, maintenance could not fix the problem until tomorrow.
I demand to see the med list and I was handed a copy of the same list I sent with mom. “No, I want to see what she is currently on.” I aggressively demand. I’m told that IS what she is on.
“NO, this is her regular list. She came here to “regulate” her pain medication. I want to know what changes you have made. That’s not my mother in that room. She’s stoned off her ass. I can’t even communicate with her. Get me someone in charge of this facility, NOW!”
Nervously the aid went into an office and spent five minutes talking with a nurse about my issues. The flustered nurse appears, nervously explaining that indeed mom’s Fentynol has been increased and morphine has been administered to relieve her pain.
I had a very uncomfortable feeling, like they were trying to hide something. I know my nerves are riding high, so I'm sure it's just me. I get a response from the nurse that I have repeatedly been given for weeks, in a very Stepford Wives tone..."This is the process." Well I got news for ya Joanna... I don't like "the process!"
I asked to speak with a doctor and once again I'm given a line that nothing can be done until tomorrow. “Tell the doctor I want to speak with him first thing in the morning. I understand my mother needs pain relief, but I want to be able to communicate with her!”
When I got back to mom’s room her meal was removed and a huge piece of chocolate cake rested before her untouched. She is still sitting upright, but her eyes are closed. “Mom, Mom…do you want me to feed you?” I quietly asked. All I got was a soft, quick, breathy, “No.”
I show her the heart shaped box of candy. “Look mama, I brought you something.” I say as I place an envelop with her Valentine's Day card in her hand. With a smile she says, “Goodies!” She held the card out as far as her arm would extend. Her arm slowly dropped to her side with the envelop standing up as she fell asleep.
Throughout our visit, mom kept repeating a single word that sounded like, "Wood." I couldn't understand what she meant.
I took this time to step out of the room and call the family to give them an update. After about 45 minutes I went back in the room and mom was still sitting up, card in hand, candy at her side, sleeping.
I reclined her bed to allow her to sleep more comfortably and lowered her lights. The movement of the bed woke her up and I began to massage the crown of her head and tell her how much I loved her. Her eyes rolled to the back of her head as she smiled. I said, “Your expression reminds me of how happy the dog was when I rubbed her belly!” Mom drifted off to sleep with a smile on her face.
I left the candy by her side and card still in her hand hoping that when she woke up she would read it. I turned, preparing to leave as she loving said, “Don’t leave me.” These words will resonate within me forever.
I spent another 45 minutes on the couch watching her rest, reviewing our last 3 years in my head, thinking how hard this all must be for her; The never ending hospital visits, years of rehab, nurses, doctors, and medications, the isolation and worry as her son maneuvered his way through cancer losing his tongue. It was all too overwhelming to recall.
I waited until I knew she was soundly sleeping before I crept away. On my way out I again announce to the nurse, “I will be back in the morning to discuss the regulation of mother’s pain medication!”
More to come...
Tuesday, February 23, 2010
Wednesday - February 3, 2010
Wednesday afternoon, medical equipment arrived to mom’s home. In came a wheelchair, an electric hospital bed with air mattress complete with side rails, and a potty chair. Odd there were no linens and I just realized there are none in the house that would properly fit a Twin XL bed. So, we’ll have to make due.
Within an hour mom arrived by ambulance with two burly men. As they attempted to get her into bed, she just sunk to the ground with no strength in her legs to help. Fortunately, they caught her and were able to secure her in her new bed with no harm.
Mom was pretty much out of it and slept until a nurse arrived that evening for “tuck in.” On the first night they often schedule a nurse to guide the family on how to adjust the bed, the usage of a “draft sheet,” and how to administer a bed pan, and change a pee pad.
The embarrassing part was learning how and why woman wipe front to rear and rotating the paper. Women… you know what I mean. Men… don’t ask! It gives a whole new meaning to "Shaken, not stirred!"
With her came a mysterious “emergency kit” that was to be placed in the refrigerator and not opened without permission. It was adorned with security tape. I assume we’re talking some heavy duty drugs here.
I purchased an intercom system from Radio Shack, so I could hear mom when she needs me. It’s very cool and has several ways to use it. It can be a standard Push-to-Talk intercom, it can be set like a baby monitor for constant listening, or it has a VOX capability which is the reason I bought this model.
This is not a cheap setup and works very well for our situation. I would highly recommend it. It can be plugged in, but it’s also compact and has the ability to charge rechargeable batteries, making the portability factor unlimited.
The system stays off until mom says something loud enough to trigger the microphone, sending the message to my intercom. It’s only flaw… it tends to miss the first word. If mother just calls my name alone, it doesn’t seem to trigger. So, I have taught mom to use a full sentence, so I know she needs me. On occasion it will pick up her all too loud TV programs, but there is an adjustment for that. So far, it works great.
Personally I don’t like the monitor function for adults. First, I feel it’s too invasive and second, I really don’t care to hear every thing from a nose being blown to farting! The monitor feature is best used for babies in my opinion.
At 1 AM I hear my first call to duty, “I have to pee!” followed by a series of calls about every 2 hours! They continue throughout the night. OMG!
The next few days we had a Social Worker, a Nurse, a Caregiver, and a Chaplin all visit. I need to install a revolving door! I am promised all kinds of help for both mother and myself.
Mom was a bit upset when the Chaplin spent almost two hours asking everything from what her religion was to what here burial wishes are and then never asked her if she wanted to pray. It seemed more like a business interview to me. She was very hurt. I didn’t even realize it until after he left and mom tearfully brought it to my attention. Shouldn't this have been his main objective? This would be one of many let downs from this hospice group.
I’m beginning to realize this is not going to be easy. I’ve been promised a lot of help and they just need time to get the right matches in place. They say they will find a woman to sit with mom, maybe read to her giving me time to run errands. I hope it’s soon. I’m already exhausted running back and forth with a bed pan! So far, no help for me.
Thursday – February 4, 2010
I ordered mom several sets of high thread count luxury sheets and Egyptian cotton towels along with some quilted washable pee pads. Hospice has provided cheap disposable thin plastic backed pads that aren’t acceptable to me. No expense is spared to pamper my mother.
This could be a long bedridden journey and I want her as comfortable as possible. Mother has always been spoiled in this department. She likes nice things and loves her comfort and luxury items. I’d call her a master shopper. She loves flea markets and has a love of JCPenny. As sick as she is, QVC and HSN dominate her viewing while awake. There was a time she had QVC on speed dial! Mom is a very compulsive shopper. The very reason QVC is in business!
Friday – February 5, 2010
Mom continues to chime like Big Ben, “I gotta pee!” She pees so often, but mostly just a dribble. I ask why she can’t hold it for a few hours and give me one good wiz. She keeps telling me, “The pressure, the pressure, I can’t stand the pressure.” I begin to rate her “work” on a scale of 1 to 10. Most are a 2, but when she does good, we celebrate. We are pretty twisted.
Saturday – February 6, 2010
Mom is resting better. I have called the on-call nurse a few times for advice. They sent out Xanax (Alprazolam) to keep mom calm and help her rest more comfortably. I wanted to know where mine was!!! Fortunately, my doctor has already prescribed my own. One thing I like about Hospice is that the have a 24 hour pharmacy with home delivery, and they even deliver late at night if necessary! Still no help for me. Even my family has failed to help at this point.
Sunday – February 7, 2010
Mom is eating well, not big meals. Today it’s been a bowl of cereal with fresh fruit, a half of a grilled ham and cheese sandwich and a strawberry Boost nutritional drink. Her meals are small, but she is still getting used to solid food again after being fed intravenously in the hospital.
Monday - February 8, 2010
Mom has been very demanding since she has been home. Things like…"I’ll have pancakes.” I didn’t ask what she wanted. It just came out like a demand. “Get me some juice. Cut my muffin and put cream cheese on it”…OK hold on…I’m feeling like a slave. I have absolutely no problem helping her with the things she needs done, but I draw the line when she is fully capable of spreading cream cheese! Don’t treat me like a damn slave! Being deprived of sleep doesn’t help my mood either!
Still no help from anyone! I'm waiting for some help from hospice so I can get groceries. I've asked family. No help there. It's time to get mom's nurse back if I can. I should have done it first thing, but I believed hospice would be giving more help. Bullshit! My family sucks!
Tuesday – February 9, 2010
Mom is doing really well. Still on the bed pan, but looking good and all this time VERY clear headed. For breakfast, she asks for 3 pieces of cinnamon raisin bread (her favorite) with cream cheese, and some juice. I asked if she wanted her teeth (full upper, partial lower) and she declines. She wasn’t feeling well the whole day. By evening she began throwing up. The raisins reappeared whole. I think, “Should have used your teeth!”
Then the famous words that will be etched into my brain forever, “I gotta pee!” Every time I remove the bed pan, I check her colostomy bag to see if it needs changing. There’s nothing in it. It’s very odd to go all day without anything at all in the bag. In fact I’ve never seen that before.
One hour later “I gotta pee!” After the routine I check her bag, it’s ready to burst! It is completely full with brown liquid. No solid waste what so ever, just something that looks like strong coffee. I empty the bag and clean her up.
One hour later, “I gotta pee!” CRAP! Once again the colostomy bag is ready to burst with this brown liquid. I’ve NEVER changed a bag in less than an hour like this before.
One half hour later. I gotta pee!” Same routine, and once again the bag is half full of this brown coffee like liquid. There is something wrong! I called the on-call night nurse and she is dispatched to the house.
Upon arrival she asks for the mysterious “hospice kit.” She opens it up and removes nausea medication and suppositories. Never in my life have I ever used them.
Now I have a dumb question, “If a person has a colostomy bag and they are no longer using the rectum because it’s no longer connected to the digestive system…do suppositories still do their job?” I get a blank stare from the nurse. “Well,” she says, “I’d have to say yes, as long as the blood vessels are intact. Good question.” Hum…
I hold one suppository up to mom’s face and say, “This is called “Brian’s revenge.” Are you going to let me get some sleep tonight?” We all have a good laugh.
I inspect the kit while it’s open. As expected, these are some serious meds including syringes of morphine. The kit is placed back in the fridge and I’m instructed on the administration of the medications given.
1:00AM - 2:00AM - 3:00AM
“I gotta pee!” mom chiming in like Big Ben…every frickin hour! But this time the 3AM call is a bit more entertaining.
Mom roles on her side for me to place the bed pan and the cheap pee pad placed underneath her has crawled up her butt crack. So, I do what any good son would do in this situation…I pull. It didn’t budge.
I make a second attempt with the same result. I steady my foot against the bed rail and give a serious pull and begin to hysterically laugh saying, “Give it back! Give it back!” It evoked memories of my childhood when a playmate would take one of my toys! “Give it back!” and mom begins to laugh so hard and says, “I can’t move my leg!”
With one hard yank out it came and we both had tears in our eyes from the laughter. Mom says. “I never dreamed I’d ever have a tug-o-war with my ass and my son in my lifetime!!”
After I placed a fresh pee pad under her and let her complete her mission, mom rested comfortably. I think the tug-o-war wore her out! I actually got 3 or 4 hours of sleep afterwards. A sheer luxury at this point, until I hear, “I gotta pee!” on my new enemy, the intercom. Whose idea was that damn thing anyway? Anybody wanna play football??!!
PS - Mom is getting the care she needs, but still no help for me!
Wednesday February 10, 2010
Today is bath day. Mom has requested to PLEASE help her out of bed so she can sit up. She has sat up on the side of the bed a few times, but she’s never really comfortable.
After her in bed bath, I change her colostomy bag and the caregiver helps me get her into her wheelchair without much trouble. Things appear to be looking up. Mom has nicknamed her Coochy-Coo because she says that to mom when she bathes her, if mom gets tickled by the wash cloth.
Coochy-Coo strips the bed and places mom’s new heavenly high thread count sheets on her prison of a bed. Now is a good time to trim mom’s hair. So, I get the razor and scissors and clean her up. I ask if she wants to do her nails.
My mother has always had the most naturally beautiful nails, never fake. All women are envious of her nails. Due to recent events they have grown too long and her polish is worn.
She removes the polish and proceeds to file them to a perfect length and shape. When she begins to apply her pretty soft pink polish, she begins to shake and make a mess out of her first attempt. I offer to help her even though I have never done this before.
I used to paint houses for extra money while I was in college. It can’t be that hard, right? I needed to have her set her hand on the tray table while I pressed down firmly to keep her from shaking. I have to admit, I did a damn good job. Mom is really looking good for a change.
Coochy-Coo has to leave and mom asks if she can remain sitting in her wheelchair until the nurse comes in about an hour. That shouldn’t be a problem. Mom is enjoying her freedom, and I can only imagine, she’s feeling very refreshed.
The nurse arrived to the tune of, “I gotta pee!” We get mom off the wheelchair and slide the potty chair underneath. This is the first time she has used a real toilet in 3 weeks!
After the deed was done mom says, “I’m tired. Get me back in bed.” Our attempt failed miserably. With the nurse in front and me in back, we lock arms and try to get mom to dance (rock) herself back to the bed only 2 feet away. Mom begins to yell, “I’m falling! I’m falling!”
“Mom, you’re OK, You’re fine.” I reassure her. I was wrong. Coochy-Coo had put a satin nightgown on mom after her bath and mom slipped right through our arms like a greased pig. Right to the floor she went as the nurse says, “Follow her down and go slowly.” Mom was not hurt.
Now on the hard tiled floor she lays. Unfortunately, she has been in this position quite a few times in the last few years. She’s too heavy for the two of us to lift. We are both less than 130 pounds and mom is 200+ with absolutely NO strength in her legs to help support herself.
I make mom as comfortable as possible. I give her a pillow and cover her to keep warm. Then called EMS and tell them I need non-emergency assistance.
Mom is only complaining that her big toe hurts and the hard floor is uncomfortable on her back. I shore her up with pillows and wait for EMS. It seems EMS does not have anyone to send for a “non emergency” so they call the local fire department for assistance.
The cavalry arrives and mom is now safely back in a fresh luxurious bed with a haircut and newly painted nails. It’s been a rough, but productive day. I think mom has made some progress.
Thursday February 11, 2010
I’m very sick to my stomach without an ounce of energy. I beginning to realize I'm sacrificing my own health as a cancer patient to care for my mother. I thought I would have more help from hospice and family!
Mom is sleeping and pee breaks are about 4 hour intervals. I manage to feed her and get back to bed. I’m exhausted with nothing more to give right now.
I hand mom the phone and beg her to call Grace, her private nurse/caregiver she's had for almost two years. I would have called her sooner, but I believed in the promises from hospice and thought maybe the family would have cared enough to help. I am bitterly angry!
I awake at 8:45 PM. Mom is sleeping as I begin to cook dinner. Feeling a little better and can’t believe I slept the entire day with only a few pee breaks. Mom is a bit out of it. She says “It’s so strange to be so dark at 9 o’clock.
I think she’s joking, but with a few questions I realize, she thinks it’s 9 AM. I know it’s not unusual to get things confused, but this is one of mom’s first tells that something might be wrong.
I begin dinner when mom says…(say it with me)… “I have to pee!” Stir the stir-fry, get the bed pan, stir the stir-fry, then remove the bed pain. (yes I was wearing gloves) We are going through about 2 boxes a week! Clean the bed pan, wash up…oh shit...stir the burning stir-fry.
After dinner mom still looks dazed. I ask a series of questions to check her mental capacity:
Q: What year is it?
Q: Who is the President?
Q: What was your mother’s name?
A: I got no mama!
A: I got no mama, Obama!
Q: Stop screwing around! Who am I?
A: The biggest pain in the ass I ever met!
OK she’s fine!
Just to be safe I’ll check her blood pressure…180/165 with a pulse of 149! Holy crap! I take it again. Mom says, “I need to pee.” Ah shit! OK Take the BP again with similar results, get the bed pan, take BP a 3rd time! Still whacked.
I call the 24 hour on-call nurse. I explain the problem and once again explain…I feel there is a problem with mom’s Catapress patch (for blood pressure) Mom has no chest pain, no blurred vision, and does not feel the need to go to the hospital.
The nurse confers with the on-call doctor and returns with…take the Ativan out of the emergency kit, give it to her if her BP spikes again and continue every 6 hours until it adjusts or if you feel she needs to be hospitalized, do so. The on-call doctor also agrees that mom should be put back on her Catapress TTS-3 patch! Finally someone willing to commit to a decision!!!
The new patch was placed and her numbers have normalized with no Ativan administered. Tada! I’m beginning to think I should have been a doctor. Some of it is common sense and knowing the patient’s history.
One more check on her BP and I’m going to try for more rest. Mom is stabilized with a BP of 146/71 – pulse 63 comfortably watching TV as if nothing is wrong.
OK need some rest…goodnight!
"My (colostomy) bag is full!” mom announces calmly through the voice box that lay on my bed. Oh CRAP!!!! Literally! Who needs sleep anyway???
IGP! By this time I’m seeing plaid. I’m so tired. I need help dammit! I can’t see straight and I’m feeling slap happy.
I enter the family room/hospital ward/bedroom singing dramatically to the tune of: I Gotta Be Me. “I gotta pee… I gotta pee…” and mom finishes BIG with, “and if I can’t pee, then you will see, I’ll pee all over me!”
I busted a gut with laughter. This pee run was worth it! By far the most entertaining to date! Yup, we’re a pretty twisted pair for sure.
More to come...
Thursday, February 18, 2010
There comes a time when we will all have to make the biggest decision of our life. Not a life altering decision, but a life ending one. When is it time to just stop fighting and let the circle of life come to its close? Will your weary body let you know or perhaps you’ve fought so long that you just want it to end?
You live years with the pain, the doctors, the hospitals and emergency rooms, the endless rehab visits that become longer with each episode…the misery as you watch your life savings spent on nurses, caregivers, and mounds of medications… fighting endlessly with each life prolonging measure. Years upon years of fighting and you are drained beyond all hope. The pain becomes so intense that you finally just want it all to end. It's time to fly with bluebirds over the rainbow.
The BIG Decision
With this last hospital visit my mother has given up her fight. The hospital doctor has suggested hospice (palliative care) and for the very fist time, mother agreed on her own accord. With tears streaming down her cheeks she pleads, “I can’t do this anymore. I just want it to stop.” This has been a decision in the making for 20 years, and now she is ready. Me…not so much.
Typically, hospice will evaluate a patient and decide if they are indeed hospice ready. There is little doubt with mom’s history, she will qualify, and she does. She probably qualified years ago by hospice standards.
February 3, 2010
After two doctors agree, hospice reviews medical records and they feel mom has less than 6 months to live, hospice is ordered. Mom accepts this and preparations are made to bring her home and keep her comfortable until the finale.
These are her wishes. There have been a few times, when she was unable to speak for herself, with Power of Attorney over her, I’ve overridden her DNR (Do Not Resuscitate – No Extreme Measures.) An order set in motion in writing when her Living Trust was formed. This time she speaks for herself, and this time I painfully respect and understand her decision.
There has been no quality of life for many years. Private nurses and caregivers have been her only regular visitors for almost 2 years. She has rarely left her bed for more than a few hours a day, too weak to go anywhere, too many medical complications, and far too many pills artificially keeping her alive and almost pain free, but never fully. She calmly signs the hospice paperwork and I leave to prepare for her final homecoming. My heart aches.
Friday, February 12, 2010
Mom is nearing release from rehab once again. The plan they were enacting was to send mom home and have her return a few times a week for out patient therapy, thus continuing to make them more money by accessing mother’s Medicare benefits. I know this game all too well, I put a stop to it.
If this were to happen, mom would forfeit her home care and only get $1,840, Medicare's limit for out patient therapy. For mom, the home care provision is much more important. This may not be so for everyone.
Upon release from a rehab stay, with doctor’s orders, home care provides her with 2 weeks of in home Occupational Therapy (OT), 2 weeks of in home Physical Therapy (PT), a weekly nursing visit, and a caregiver for bathing and small household chores, twice a week.
On top of that, she is given a home medical monitor that takes her weight, blood pressure, pulse, oxygen level, and asks a series of questions pertaining to how she feels and transmits the vitals back to a health care center and reviewed everyday. She had home care for several months in 2009! I’d say that’s worth more than $1,840. But then I’m not the nursing home/rehab center trying to make a buck. Where do their interests really lie? Just my opinion!!!
In addition to what is provided by Medicare, mom has a private nurse and caregiver that helps with household chores and miscellaneous errands. I feel mom is well cared for, but at great cost. She is still very ill and needs so much assistance, yet her mind is as clear as a bell. She is fully aware of everything. I think this comes from the fact that she reads 3 to 4 novels a week, Nora Roberts being her favorite. She reads so much, it's hard keeping her in books. Aside from the television, this is her primary means of entertainment. What else do you do when you can't leave your bed?
I’m so excited! I’m on my way to finally bust mom out of rehab! Mom has been in this nursing home since November. She’s finally going home! She has worked very hard to get her strength back over the last few weeks. Mom tells me, “They’re busting my ass!” This was done at my insistence because I was beginning to feel mom was just income for them. She wasn’t being workout like she had on past visits.
From my perspective, this is how it appears: she has Medicare and AARP/United Heath, a supplemental insurance that gives her a combined total of 100 days of fully paid rehab. So, why not take your time and use the full 100 days? Who’s it gonna hurt, right? Let her rest and relax and enjoy the stay. BUT, if she has a second episode after this stay and it’s before the 2 month Medicare reset period, (you need to be out of hospital and rehab for a total of 60 days before Medicare will again pay) she becomes self-pay to the tune of $7,000 a month. Either way, rehab wins. Unfortunately for mom, this has happened many times over the years and the bills are staggering.
Let's Get Sprung!
The rehab center has arranged a home site evaluation to make sure mom will be safe and that all obstacles are out of her way. I picked her up and one of the rehab agents met us at the house. Mom is in a great mood! She’s so happy to be home after 3 months! The evaluation goes well and mom is cleared to be released. She’ll have to go back to the rehab center until all the paperwork is finalized. It could be a few days.
Mom excited to be going home!
I get to keep her home for the day, but she must return before 8 PM. While she’s at home sitting in her recliner smiling from ear to ear, she makes a few phone calls. She calls her sister, who lives in Michigan, and they have a wonderful conversation. She then calls her brother-in-law, “I’m bustin out!” I hear her laugh and explain all her recent events.
Mom is happy and is looking great for a change. Her attitude is positive and she seems excited, but a few hours at home and she’s tired. She’s ready to return to rehab.
That evening, back in rehab, mom begins to experience abdominal pains. She complains to the nurse, but was told, “The stomach flu is going around and you probably just have a touch of that.” Mom feels she might need to go to the hospital and the nurse dismisses that thought.
What a Difference a Day Makes
Mom’s stomach pain is getting worse. She demands to go to the hospital and asks her roommate to witness that she is now demanding to go. My mother NEVER wants to go to the hospital. I sometimes have to beg her. So you know this must be bad!
I get a phone call from rehab, “We are sending your mother to the hospital. Nothing serious, but just to be safe, we’re sending her as a non-emergency." She was ready to be released. She was fine yesterday. What happened? I'm assured it was just precautionary.
I’ve been down this road too many times before, so I wait one half hour and head for the hospital. Small problem…mom’s not there. I called the rehab center and ask if she has left the facility. She has and she’s now missing! WTF?
After an hour of phone calls and research trying to track her down, I was informed she was sent to the hospital I was standing in, but the emergency room was overflowing and they closed it, diverting all new patients to the next closest hospital. Does Costco sell Xanax by the case???
Mom has never been to this new hospital. In fact, I had never even heard of it before. When I arrived, I insist on seeing my mother. They tell me she’s not here. After I let off a few F-bombs she miraculously appears in the emergency ward barely able to speak, eyes rolled back in her head, moaning in excruciating pain, now on heavy morphine, with slurred speech.
The doctor explains that she has an intestinal blockage. This is her third in the last 4 years. It all began 20 years ago when she had diverticulitis and her colon ruptured. Since that time, she has lived with a colostomy bag. She has never been a candidate for a reversal due to everything else wrong with her, mostly due to her COPD and CHF. She almost died from this event, but after being kept alive on a ventilator for several weeks, she survived. We come from tough stock!
To make matters worse, she has a double hiatal hernia that has slowly emerged over the years. During her last emergency, it was explained that the ball outside of her belly that appears to be a basketball, (she looks pregnant) is actually a mass of muscle, skin, and intestines all intertwined. As the muscle and skin tissue grows, it will continue to squeeze and cut off the passage of her bowel. Surgery is not an option.
Even though the emergency room doctor has diagnosed the problem very quickly, I’m worried because she has never been admitted to this hospital and these doctors don’t know her complicated case history. Sure, records can be ordered and reviewed, but that takes time and is subject to interpretation.
Her Last Words?
Mom is barely able to speak at this point, but she’s strong enough and angry enough to tell me how rehab blew her off saying she had the stomach flu and how she had to beg and finally demand to be taken to the hospital.
Now I’m enraged! This is a woman with a colostomy, a history of intestinal blockages, a double hiatal hernia, and now green liquid bile fills her colostomy bag, a tell tale sign of a blockage or intestinal problem...and they dismiss it foolishly as the stomach flu, sending her to the hospital with a non-emergency status!
Mom will spend the next week, once again, fighting for her life!
Another Battle Begins
More to come...
***To the best of my knowledge the Medicare information is correct. I am not an expert. Please consult your Medicare guide for clarification and which services are best for your individual needs.
Tuesday, February 9, 2010
The last few months have been a whirl wind of events. After spending Thanksgiving in Detroit, I arrived home for a very short period. Soon I found myself back in the air, on my way to MD Anderson for a complete check-up and to have cataract surgery in my left eye. My right was done over 2 years ago, just after my cancer surgery. I’ve never been happy with the result, so I’ve put this off. I figured it’s time to just do it and get it over with.
With anxiety running high, I always find myself stressed when it comes to these regular check-ups. My mind twirls. Has my cancer returned? What will I do if it does? Should I begin to mentally prepare for more surgery? Maybe the cancer has traveled. Take a Xanax...ahhh all better!
After all my tests (CT, X-rays, and blood work) all was looking well. I was just too tired to report in at the time. My white cell counts are normalizing, but my red counts are still low. My eye surgery was scheduled for the next morning and I had already been seen by the anesthesiologist.
It was now time to see my dear friend and surgeon, Dr. Stella Kim. The staff ran me through a battery of eye tests. Then we did the same ones all over again. I assumed they were just being thorough. After a few hours of this, Dr. Kim entered with her sweet demeanor and said, “Sweetie, I have some not so good news. I am unable to perform your eye surgery. Going by your results, insurance won’t pay for it.”
OK, now I’m puzzled. What is the problem? It seems that my vision in my left eye, which was 20/80 in 2007, is now 20/30. After two years of recovery my vision no longer qualifies for cataract surgery to be paid by insurance. A script for glasses is plan of action. But, I have to ask…Is this normal? I guess it’s a good thing, but sounds odd to me. Can your eyesight actually get that much better with time??
With my trip to Houston cut short and Christmas only a few weeks away, I thought I would continue the road trip and travel on to visit my mom for the holidays. She was again in a rehab facility, but I was told I could break her out for Christmas! Poor mom has spent her last 3 Christmases and birthdays in rehab or hospital.
With the Rain Comes a Storm
Upon my arrival, mom had the flu and I was not allowed to take her home and Christmas was once again a bust for mom. She lost all her momentum and was basically back to square one on her rehab progress due to the set back, a month of rehab down the drain.
I’m also beginning to suspect that this rehab facility, which once worked miracles on mom, was beginning to lose its effectiveness. There has been a major turnover in staff and I have to admit I’m not happy with what I am witnessing. The place has gone down hill. Mom spent all of last month trying to recover. A bit brokenhearted, I returned home to wait for her release.
I’m exhausted, I know I’m pushing myself too much and I’m trying not to give into the fact that my body is drained, coupled with pain in my jaw causing me trouble. For this reason I have not been very active on my blog. I have been preparing for mom’s release and when I catch you all up, you’re going to be surprised at the outcome. When I find more energy I will fill you all in on "The Circle of Life.”
Thank you for all for your emails and phone calls with your concerns.
Saturday, January 16, 2010
Sometimes life can be so difficult, especially living with cancer. Then something comes along that makes all those woes insignificant and puts life into perspective again.
Chris Pierce sings
"There is no greater rallying cry for our common humanity than witnessing our neighbors in distress. And, like any good neighbor, we have an obligation and desire to come to their aid."
President William J. Clinton
President George W. Bush
Click on your favorite charity to help.
The Clinton Bush Haiti Fund
American Red Cross - International Response Fund
International Medical Corps
The Jewish Federations
Doctors Without Borders
Catholic Relief Services
United Nations Central Emergency Response Fund
GIVE...there's nothing more to say.