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For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)

Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Friday, March 26, 2010

After a While

After a while you learn
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
in mid-flight.

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 Circle of Life - Part 5

February 15, 2010

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

The Circle of Life - Part 4

The Reprieve - 2 or 3 Days

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...
Peace B

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi