Tuesday, February 3, 2009

Words from my Daughter

i love you mommy remember i am always here for you i know this has been hard for you however i also know that it was more than worth it for you. always remember that you did what she asked of you and more than she could have ever wanted or needed. you gave her love, comfort, and safety. she is now helping you, watching over you guiding you, she is your care giver now, she is the ``the big sister now`` she has your daddy at her side and together they will help you through this and many other struggles throughout your life. she now has everything that even life could not offer her. remember i am here for you when you need to talk love you mommy.

August 2, 2008 2:48 PM

Wednesday, December 10, 2008

Holidays Without You

Dear Brenda,

Your chair was empty Thanksgiving. I waited for the phone to ring...for you to be on the other end asking "What do you want me to bring?"...I waited for you to knock on the door....Your bright green eyes entering the room before you. I waited and you did not arrive.

Your son's would not come this year. It must be so hard for them.

I wait for you to visit. I miss you so much.

Love your big sister
Winter

Wednesday, September 10, 2008

The Last 5 Days of End Stage Liver Disease Bleeding Out

Your experience will be different....this is ours.

Sunday...the last lucid moments with my sister.
Monday...she could no longer be left unattended
Tuesday...she didn't even know who she was
Wednesday..she could no longer get out of bed
Thursday...her transition

Her body continually moved about. I set my chair and footrest beside her bed Wed. night and stayed with her. I had to move her leg back onto the bed all night long.

5 am Thursday morning as I slept beside her, my daughter asleep in the other room. My sister woke me crying out "Help me Marla"....I tuned on the light and set her bed up...she began bleeding out through the mouth. I yelled for my daughter to help.

I was aware of the bleeding out process with liver disease and had given my daughter specific instructions. She was to put on gloves and bring warm water and wash clothes to me and get out of the room immediately.....then call the hospice nurse. SHE WAS NOT TO ENTER THE ROOM AFTER THAT.

Brenda sat quite in her blood covered yellow gown. I thought she was dead. I had already put on gloves as my daughter brought in the water. I saw she was still alive and calmly and tenderly began cleaning her. I cut her blood covered gown from her body and placed it in a trash bag...I cleaned the blackened blood from her face and body. She just sit there without movement..I don't even know if she knew what was happening.

As I was finishing cleaning her the nurse arrived....between the two of us we changed the blood soaked sheets from beneath my sister and put a hospital gown on her. Brenda was clean the bed was clean and it didn't get any better.

My daughter worried about me....insisted I remove my clothes and shower....I only did this to comfort her worries.

We had liquid morphine on hand....it had not been used until this day. The nurse looked at me and said it wasn't only for pain ... it was also for this. THIS.....THIS? What was THIS? Simply put it was the body fighting to live. Thrashing about unable to rest....the person I knew as my sister did not exist...only a body fighting to live.

The morphine began early this Thursday morning and within one hour the dose was already doubled...her body fighting to hang on. The human machine continuing to run despite it was broken.

For several hours she would say "Help me Marla hurry hurry". I'm haunted with these words of hers....I KNOW WHAT SHE MEANT. I will explain later.

Darrin arrived about 11am....He tenderly held her hand and it seemed she knew he was there. The hours passed as she thrashed and moaned...the morphine continued and we cried.

Then it happened.....we sat her up the two of us locked arm in arm around her as I held the bucket and she bled from the mouth.....we turned her to her side to insure no blood was choking her and she bled from the nose......she was dead before we turned her. I screamed for my daughter to call hospice...I continued to work on her to get all the blood out...Darrin stopped....he knew it was over....I couldn't....I could only cry..."Brenda no Brenda no....not this way" I then felt two gloved hands on my shoulders telling me it was over but I could not stop. I could only see my baby sister bleeding and concern that she was choking....my mind could not grasp the reality of her death.

The hospice nurse called for help.....then called some meds to calm me. Somehow, they got me out of the room...I don't remember....the next thing I can remember is sitting on my front porch as Darrin bleached my hands and arms trying to remove her blood.

Brenda had witnessed more than one person die of liver disease she asked me once...."When the time comes...start pushing the morphine...don't let it go on....I will already be dead." I know her mind was thinking about this as she cried out for me to hurry and help her.To be honest...I considered it more than once....in the end I COULD NOT DO IT.

Thinking about doing hospice? THINK LONG AND HARD.....will you do it? Will you be able to live with it if you do? Will you be able to live with it if you don't?

Within minutes the two hospice nurses had Brenda and her bed cleaned. They placed her favorite purple gown on her body.... fresh clean sheets, her hospice donated quilt..her hair brushed and head on a pillow.

Brenda was no longer in pain...ten years removed from her face...her youthful beauty had returned. Her body was at peace...her soul lingered in the room. We kept her with us for about four hours as everyone including her oldest son arrived to say goodbye.

The coroner, his helper, her eldest son, and my son....removed the hospice quilt, wrapped her in linens, placed her in a body bag and carried her from the bedroom to the gurney. I had to open the bag and kiss her goodbye one last time and so did her son.

The velvet red cover was placed over her and I held her leg as she was taken to the van. I touched her one last time and said goodbye. The doors shut and my baby sister was gone.

The process of losing her a reality, the process of living without her, uncertain.

Wednesday, September 3, 2008

Hospice Can You Do It?

As I said we decided on Hospice and I thought I was prepared. As time passed it got more difficult to care for Brenda. Several times Hospice offered a 5 day hospital respa for me. I refused.

To hospice a loved one takes devotion and commitment. There are agencies that can send paid employees in to help care for the ill.....but I wasn't going to have that. I couldn't imagine a stranger at her side.

If you are thinking of hospice PLEASE think about it. Do you have time? 24 hours 7 days a week time! Do you have family that can help? Will you be using paid employees to care for that person? Will they take as good of care as you or a family member would? Are you ready for someone to transition within the home and still live there?

I guarantee you...nothing and I mean nothing got done around the house. Dishes piled, the living room didn't get cleaned....nothing. It seemed I could only do a dish here or there...everything including my life was on hold.

Brenda's room was immaculate....her bedding her gowns her body .... everything about HER was taken care of properly. Outside of her room....became a mess.

I was doing this by myself. No help until the very end....My dil came in and stayed with me Monday and Tuesday...my daughter was here Wednesday and Darrin was here Thursday when she left.

I don't know what I would have done during that time. BE PREPARED....it will become more than ONE person can handle.

Thursday, August 14, 2008

How Do I Find The Words

My sister's memorial is Saturday and I'm still struggling to find the words for her tribute.

Tuesday, August 12, 2008

HOSPICE CAREGIVING AND DYING AT HOME

I share this experience in hope should you stumble on my blog it can be help to you and your loved one.

Brenda was a CNA and licensed Home Health Care worker. She was a paid employee to help with hospice patients dying at home. When we started hospice she told me "I should know how to do this". I told her no one could possibly know "how to do this".

The caregiver will be unique individuals with personal strength and weakness. The dying are individuals with personal strength and weakness also. What I'm trying to say is your experience, my experience, and circumstances will be different.

I see only three reasons to sign up for hospice and die at home. There may be more reasons. Remember, please, this is our experience I'm sharing.
  1. Love
  2. Emotion
  3. Finances
Brenda and I signed up for hospice because of love and emotion. I cannot say this was right or wrong but I can say because of these reasons I was blind, or better said unaware of what was to come.

I was 17 yrs old when our Mom passed in a hospital while I held her hand. I was 42 yrs old when our Dad passed in a hospital while I held his hand. I really thought at 55 yrs old and these two experiences I was prepared for my final loss. I was wrong! Very wrong!

I'm not finished....I question if I'll ever finish blogging about this. There is so much for me to process as our journey began and ended.

Monday, August 11, 2008

SHE'S HOME WITH THE GENEROSITY FROM STRANGERS

Sat 10/09/08 10:50am The funeral director brought my sister's remains to me. Many many many thoughtful and caring people have helped pay for her cremation and I was able to buy an urn and three keepsake urns that match. One for each of her boys and one for Darrin.

I had no idea how I was going to pay for all this. I opened my email the other day and donations poured in from all across the US and Canada. I cried because these generous people answered my sisters prayer.

I was not at all pleased with the thought of Brenda's remains being delivered in a cardboard box. I was horrified to say the least and they would hold her remains until the cremation was paid for. Hundreds of people I don't know so generously gave and the nightmare of that cardboard box never became reality. How can I thank them properly? I have spent hours sending thank yous to their email addresses...but it seems so impersonal and no way for me to get addresses. But I thanked each and everyone of them.

Call me crazy...but that death smell left the room too. I feel more at ease. Her remains are sitting across the room covered in a bag of some sort they gave me and I'm relieved. FINALLY.

It is Permanent. It is Real. It is Closure.

Friday, August 8, 2008

Pain Denial Anger and Depression

I feel like I cannot pull the towel out of my ass to throw it in!!!!!

Oh how it hurts. I just know Brenda is going to call me...knock on my door for a visit. I just know this isn't real. It can't be.

Is it my imagination....I enter the room she made her transition in and I smell death. It won't go away. Is it there or is it imagined...perhaps a little of both? I don't know.

Just about the time I think it's over another piece of mail arrives reminding me there is still unfinished business to conduct on her behalf. Another phone call requires my attention to finish this up.

This has some how transformed to "BUSINESS". I cannot seem to get away, there is no where to run, and I cannot hide from it.

Anger Madness Or Just Plain MAYHEM

Don't misunderstand me...I've been given a lot of blessings and unexpected gifts..but at this moment it's how I feel.

When a funeral is held it becomes a "RUSH" to the grave. Your loved one is here then poof your loved one is gone....six feet under and done. The process of grieving begins immediately and life resumes.

Brenda wanted cremated. Let's look at this. She died July 31 it is now August 8th. They called August 7th and said she would be delivered to me Saturday August 9th. Her memorial will be August 16th.

Now what is it about our culture that we cannot escape from being trapped in this frame of time? You know, the one from death to dirt? I'm caught in this time warp of madness...I can't go backward and I can't go forward. Why is it that a funeral or memorial service releases the living from this frozen span of time?

It's crazy. Just crazy. Caught in a cultural time span? Caught in a natural time span? Is it self imposed? Politically correct? Whatever it is.....

I WANT OUT

Crazy...it's just crazy

Wednesday, August 6, 2008

MEMORIES OF TWO SISTERS the songs

Seen through the eyes of a big sister. I love my sister.
This video plays two songs and ends with some words.

I deleted this video

Tuesday, August 5, 2008

MEMORIAL SERVICE FOR MY SISTER

Brenda Carol Dobbs (Robinson) memorial service will be held August 16, 2008 1pm CDT at the Rock Island Church 101 E Main Herington KS 67449

Monday, August 4, 2008

THE GIFT OF UNCONDITIONAL LOVE

Unconditional love...a small phase. Do we acutally "know" what it is?

Think about it for a second...ponder your ideas on this tiny phrase...then read on and find out how incorrect you and I have been.

We say our dogs have unconditional love...that is false. Leave them without food, water, shelter, and love and see how long they stick around. Our animals have conditions attached with their love.

We say we love our children with unconditional love...that is false. There are conditions expected by a parent toward our children. Examples; behavior, manners, school grades, respect...the list goes on and on. This is not unconditional love.

We say we love our spouses with unconditional love...this is again false. Conditions apply here too....respect, no abuse...again the list is endless. This is not unconditional love.

I have been given the gift of unconditional love. This is one of the many blessings and gifts I have received helping Brenda with her transition to the other side.

There where no more conditions between two sisters. All the nonsense of conditions dissipated over the weeks and days. Conditions no longer existed in our relationship, in the end it was pure love without conditions.

Thank you Brenda for this one of a kind special gift that two sisters shared. I will always and forever love you.

Friday, August 1, 2008

My Sister Has Made Her Transition

Brenda left this world July 31, 2008 4:25pm CDT

I still have more to say and will keep blogging. I just don't have it in me at the moment

Tuesday, July 29, 2008

More Disorientation with end stage liver cancer

Brenda no longer has earthly conversations. She still recognizes me and says thank you when I give her a drink or tidy her bedding.

I do know she is conversing on the other side. I sit and watch her lay with eyes open staring aimlessly into the abyss. She giggles and I know it is going to be a glorious transition. Sometimes she moans but she is with out pain.

She constantly makes hand movements as tho she is drinking. She has smoked for years and she sometimes makes smoking movements. She sees things that aren't there..grabbing into the air as if catching a tiny fairy or perhaps an angel extending a hand.

They put a catheter in her yesterday in hopes she stay in bed.....but no.....she still struggles her weakened body up and sits on the commode. She mumbles to some one or something then she will look up and say "ok I'm done". These commode conversations must be entertaining to her as she smiles during them.

She has not eaten for 4 days now. She is taking little fluids, swallowing is becoming difficult, she is becoming more dehydrated.

When Richard was ministering to her Sunday he asked her if she wanted anything. She replied yes, a prayer for my sister. He shared this with me tonight and I'm still crying. This is an over whelming blessing my sister gave me.

My daughter n law is now staying with me and we are sharing shifts caring for Brenda around the clock. Brenda's wish is to die at home and I am seeing to that.

Monday, July 28, 2008

Christian Do Gooders

Why is it that when one learns of imminent death, by the way I prefer it said as transition, that all Christians collectively want to send some one to save that person?

How haughty and presumptuous of them. What makes them automatically think that person hasn't already been saved? How dare they send immediate negativity in our direction.

What happened to Christian love? ministry? mercy, spirituality? Where did it go?

I am pondering this phenomenon.

Sunday, July 27, 2008

Disorientation Hallucinations with End Stage Liver Desease

Brenda has stopped eating food. A different kind of energy is needed now. A spiritual energy, not a physical one, will sustain her from here on.

She is sleeping most of the time now with her eyes open. She can be awakened from this sleep, but there is literally one foot in each world now.

She is confused, there is aimlessness to all physical activity, and focus is changing from this world to the next, she is losing her grounding to earth.

Words seem to be a connection with the physical life that is being left behind. Words have lost their importance; touch and wordlessness have taken on more meaning.

Brenda is making the transition to the other side as comfortable as can be expected. More so than I ever imagined possible.

I have been given the most awesome gift a person has to give. Brenda handed her dieing to me, her trust, and her love to care for to the end. She knows I'll be there insuring her last wishes are full filled.

To my surprise she asked for a pen and paper last week. She wrote "I Can Only Imagine" Mercy Me.

Today I downloaded that song and few more by that group. When I heard the song the flood gate of tears burst forth from me. I know this song is ministering her.

She can no longer be left unattended with her confusion. She fell today and I had only left the room for just a second. I will make a cot in there tonight and sleep along side of her to protect her from herself.

Thank you for your comments....it helps me

Monday, July 21, 2008

HUMOR

Well I just gave her some more of that nasty "make her poop med" at 3 30pm. I have to do this every hour until she poops.

But I just have to make note of the humor so it will be here when I need to reflect.

She had the heating pad control in her hand trying raise her bed up. I told her that and she smiled and said....get these toys out of here they don't play fair....and we laughed.

I hope when my time comes I can die with half the grace Brenda is showing. She is a true lady in the end.

I hope when she poops she gets her mind back.

Did I mention I love my sister?

How Often Will I Post?

AS OFTEN AS IT TAKES. AS OFTEN AS I PLEASE. AS OFTEN AS MY MIND IS CLUTTERED AND MY HEART IS HEAVY.

I DO IT JUST TO VENT, TO SHAKE THIS MORBID JOKE GOD HAS PLAYED ON US, UNTIL THE COWS COME HOME, AS MUCH AS I LIKE.....THIS IS MY WORLD AND IT'S HERE FOR MY ANGER.

YOU DO NOT HAVE TO READ IT....BUT I HAVE TO LIVE IT.

SHE IS ONLY 51

On to the bitching

Thank you Nan. Misery loves company and I need it.


I think to myself "If I'm feeling alone...hers has to be greater".

Over this weekend Brenda has started her transition to the other side. I asked her Sunday if she was giving up. She responded "I don't know". I told her God was not going to make her suffer much longer. It's evident.

The ammonia has backed up and her confusion is to the point of dementia. I have to give her this new med every hour until she starts pooping. The liver moves ammonia from our body and hers cannot do it so the only way is through her bowels.

The hospice nurse has brought me diapers for my sister and I've tried to tell her she will most likely crap herself. Don't worry Brenda I will keep you clean.

Losing my sister is one thing losing her like this is another. WE TREAT OUR ANIMALS BETTER THAN WE TREAT HUMANS.

Liver Cancer The Battle Begins

Brenda told me 10 years ago she was diagnosed with Hep C. We knew she would eventually require a liver transplant.

She went to the University of Omaha and began the process of transplant a few years after being diagnosed. At that time she was not disabled and had private insurance through the company she worked for. She was on the inferion treatment at a cost of $3500 a week...her company canceled their insurance because of cost and the new insurance company would not cover her....PREVIOUS CONDITION...those words so many Americans dread in this so called healthy and compassionate country.

No insurance to pay for a transplant U of Omaha wanted her to do her own fund raising. What a laugh! Living in a small town in the middle of Kansas...what's a fund raiser? $50.00 $100.00? and believe me that would be a sizable amount. So now what's left?

She eventually moved to Emporia and took a job caring for the dieing. Yep that's right Hospice. She did this for about 7 years. During this time Brenda was finally granted disability. Medicare would now pay for her a liver transplant.

I took her to KU Medical Center on July 7, 2008 to begin the transplant process. On July 9, 2008 I brought her home to die. Her liver has a 4 inch tumor and her cancer markers are in the thousands.

It has been a revolving door with Hospice. They are angels.

She took a day to consider DNR papers. That means DO NOT RESUSCITATE. After a thought she looked at me and said she wanted to sign them....after signing she again looked at me and said "You know this means you cannot call an ambulance" Not a question...it was a fact.