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Everything happens for a reason
The Ten Commandments for Hepatitis Survival
August 1,2000 The Day My Life Changed
This lovely story is written by our friend Sando. She has shared her last moments with her beloved John.
Today is August 1, 2000-last year on this date was when I took John to the Gardner House (Hospice). I never thought it was going to be the last time he was ever in our home we had shared for the last 13 years. But it was.
August 1, 2000-Myself and Carrie (daughter) waited till around 9:00 pm to take John because of the heat. The nurse had come earlier because John was having a really bad day. She told me that when people are dying they sometimes become scared of the ones they love most. And John had become afraid of everything around him, even me.
The night before was the night I had let me realize that John was dying. I knew it but I was the Queen of Denial, if I didn't want something to happen I didn't let it happen. And I didn't want John to die so he wasn't dying. But I was lying in bed that night and John was sleeping so deep beside me-and so different a sleep. John could never go to sleep till I was in bed and if I got out of bed in the night he was awake in a flash-asking what was wrong!
But as I was listening to him sleep I think I just had no more fight left. I started crying and I didn't want to wake him so I got up and went to the living room. I cried so hard and loud. It all hit me - everything! I begged God to let him come out here and ask me what was wrong. Then I would know he was ok. But I sat there all night crying, knowing it was true. I never felt more alone in my whole life. It was true - John was dying - he was leaving me and I could do nothing to stop it!
So that evening we took him to this house that looked like all the other houses in the area. But when we arrived a very nice women came out with a wheelchair and from that point on John was treated like a KING! And he loved every minute of it. Haaa
I on the other hand was asked to follow the doctor and do the paperwork. I had done so much paper work since this all started. I think I just did it out of habit. First thing the doctor said when we sat down was "Are you ready for this?" I honestly didn't know what he meant. I said ready for what? His reply was like a bolt of lighting hitting me! Are you ready to let go of John and let him die?
I was a mess when Carrie came in the room. I only said nooooooooo I am not ready! She just held me and we cried till the tears were gone.
Hospice believes in being up front and telling you like it is. At times this was very hard but I am also glad they were this way. We finished the paperwork and I went back to where John would spent his final days. I was a very beautiful room with everything like home except the bed. I got him settled. He was looking at me with the look I hated. The please don't leave me look...
Carrie laid in bed with him for a bit and then I told him I had to get home. Carrie was expecting a baby and she was so tired. I was past being tired, I think I was going through the motions of the day. He said what time will you be here tomorrow? I told him as soon as I could. I hated leaving him more than anything. So I got him tucked in and after the 10th thing he remembered I told him I loved him and Goodnight.
August 2 & 3, 1999-when John was in the hospital before the phone
was my nightmare. He would call me all hours. He was so lonely, and he hated not
sleeping in the same bed more than anything. I still have messages on my phone
from nights he called and I didn't hear the phone. They are so cute too. I
listen to them sometimes. One special one is him saying "Sando I love youuuu!!!".
He was pretty sick when he left it and no one would think it was him if they
heard it. But I know. I am so lucky to have them.
But when I woke up the next morning (August 2nd) the first thing I realized was
he had not called me! I freaked! I called Hospice and he was fine. No doubt
flirting with the nurses!
On one hand I was relieved on the other I was so hurt. I don't know how to
explain what I felt-it was like the night I cried all night and he didn't know
anymore when I needed him. It was like our connection had been broken! Because
he was dying!
The next 2 days were nothing but running for me. I had appointments with Social
Security to try and get John disability. I knew inside he was feeling less a man
because he had not brought any income into the house for a while. And he had
been in a Short Term Nursing Home for 6 days a few weeks before and my insurance
would only pay 3 days, so I was trying to get the $4500.00 bill paid for that.
Let me tell you one thing that I do know is the SYSTEM sucks!
And I needed to get to Hospice cause I knew John would be walking the halls
until I did. He always made me feel so special, anytime we were apart I knew he
needed me. Many times I would pull up to the hospital and there he was just
walkin up and down looking for me. It broke my heart to think how lonely he must
have felt inside.
When I got to Hospice I will never forget how his eyes light up (like never
before) when he saw me walk in. John was any nurses dream. John was always the
type that respected others, he never came to dinner without a shirt on, said yes
ma'am-you know the type. And he never lost that even now. So the staff just
loved him. He was always afraid he was bothering them so he would wait till I
got there to get anything. Then I had to bother them....... haaaa
When I got there he had already won their hearts. I was able to tell him he
could get the disability and I know that eased his worries a lot! I never told
him that 3 days later they called and told me they made a mistake and he
wouldn't be getting it. Bastards!!!
That day and the next were pretty easy. He was settling in, I thought he was
even doing better. He could still shower, go to the bathroom and things like
that. I saw he was trying to hold on to every bit of dignity he could. But I
could also see some things getting harder.
We went outside a lot, the back was so beautiful. We sat out there a lot. John
would go into these trances, I called it zoning. He would be talking to you like
normal and then for no reason he would just stop and stare off into space. I
knew and would just wait.
We would sit and talk about things like we had a tomorrow. He talked about
Carrie having the baby (our first grandchild) and how Josh was. He asked how
Apollo (dog) was. Told me things he needed to do when he got home. I just agreed
and even went into that dream world a time or two. **smilin**
Sometimes he would say some pretty strange stuff. At first I would get really
frustrated cuz I couldn't make him understand something, but then I figured what
does it really matter? So we played the game of pretending everything was fine!
But when ours eyes met they told the truth. John and I had a connection so
deep-we didn't need words anymore. Even before this. We could sit in a room and
not say a word and have a conversation! I GUESS THAT WHAT THEY CALL LOVE!!!
August 4, 1999-Last night would be the last night
I left Gardner House or John. When I got here today I could feel
something was wrong! John had gotten worse. He was having trouble
understanding where he was and why. In the night he would try and get
out of bed and he fell 2-3 times in the night. He had awful bruises on
his thigh and side (he always bruised very easy).
My heart broke for him, he told me
I just wanted to go to the
bathroom... They had tried everything to make sure he was safe. They
were not staffed to have someone in every room. They had put the sides
up and he tried to climb over them. That was the worse fall. They even
had a alarm hooked to his shirt-if he got up and the connection was
broke a alarm went off. **smilin**
I made a joke of it with John so he
wouldn’t feel like a baby needing
watched. He just looked at me with those eyes that could melt my heart
in seconds. It was then that I decided I would not leave him again.
My mom was coming in town today,
she did every August and she was better at denial than me-matter of fact she
taught me the ropes! I knew she
was not ready for what she saw. John loved my mom and she loved him.
And the look on her face when she saw him stopped time! But she grabbed
hold and put that mask on we have all worn in times like this. John was
happy to see her.
I had told her about not wanting to
leave John alone anymore and she
agreed and took over at my home. I called Carrie and we talked. We
decided that when she was here I would go home, shower and whatever else
I needed. John was never without me or Carrie from then on.
Later that day the social worker
came and asked if we could talk outside, so I knew something was up! John was
put out cuz she wouldn’t talk
there. I waited till he forgot (which was 1 of the good things about
this-he forgot things fast! haaa) so my mom and I went to talk to Sue.
She said a lot of stuff I didn’t
understand, but what it came down to
was that they thought John could be released!!! OK-after I picked my
chin off the floor, my mom who understood what had just been said made
me understand.
Hospice is a place where people go
to die-plan and simple! John was
dying but not fast enough! She explained that anyone in a facility like
John was in had to be going down hill, it didn’t matter he wasn’t
getting better. He was staying the same except for his mind was getting
fuzzy. But physically he was staying the same.
My mind is racing trying to
think-ok I live in a upstairs apartment that
I almost didn’t get John down when I brought him here. Now they want me
to get him up them! And a lot of other things like work-caring for John
on & on. Sue did suggest a nursing home maybe. And I calmly told her
over my dead body-he had been in one for 6 days and never ever would I
ever do that again! I think I was in shock!
Carrie and I had already been doing
shifts at home with John before this
and I was just gonna do it again-for the rest of Johns life if need be.
But later after things quieted down and I was alone with my thoughts
(John was over there zoning. haa) I tried to vision it all. How was I
ever gonna do it!!! And Carrie she was gonna have a baby, this was
already getting to her, I could see it. I just said ok-do what you have to do..
Sue said it would be a few days
before anything was done either way.
She was just getting me prepared.
August ??, 1999-For 2 days I was overwhelmed with trying to decide what was gonna happen. But the 3rd day it was decided for me-John was still dying and they were gonna keep him. Pretty sad that I was relieved to hear this huh? But there was no way in Hell john was gonna go to a nursing home as long as I was alive and walking this earth.
Anyway the days were just all one day now-John was pretty out of it. John needed a shower and I knew he couldn't do it alone and I was the only one he would allow to help him. I have to tell you I never laughed as hard as we did that day in that shower. I came out wetter than he did. John wasn't finding it as funny! He thought I was gonna let him fall, and I bet it wasn't funny at all. I just had to laugh-or I would have cried my eyes out. I knew that was our last shower we would ever take together.
I told John at one point - Baby, I can remember our shower together be a lot more fun-can't you? Oh, he gave me a look-a good look! **smilin**
Everyday we lost a little more of John. He was being very difficult! He was still trying to get out of bed on his own and still falling. My poor baby was black and blue from head to toe. And he just couldn't understand. He even told me once - I think they are beating me! I assured him they weren't. He smiles and said I know.
I was sleeping in a recliner next to John and at night I would wake up to see John trying to get his leg over the rail or stuck or he had already fallin. Sometimes out of pure frustration I would tell him FINE YOU WANNA FALL - FALL! I AM GOING TO SLEEP! I would close my eyes for a second and then peek. He would be tryin to get back under the cover. **smilin** I always thought he was so cute.. :)
John would wake me in the night and tell me he had to go to the bathroom, which was right across the hall. But getting him there wasn't easy cuz he was very unsteady. He didn't think so-but he was. We would get all the way there and he would say Man, I don't gotta go now! What could I do-just love him.
I slept close enough so we could hold hands, sometimes I would try to get in bed with him. But he was to confused to remember what cuddling was, and I was just crowding him. Except the night before he died-I slept with him the last time. God did it feel good too!
I just reread what I wrote and I am making no sense-I am trying to remember but I can't! I think I will just share things I know from here on. I do thank God for giving me the time he did for John and I to had together. Many times I remember thinking I wished John was just hit by a car or something quick. But I am so glad it happened the way it did. There was time to love him, hold him, tell him so many things I would have never told him.
I was so lucky to have John in my life. We had 23 years-I would have liked 23 more but I can't! John always told me when we got old and it was just us two, he wanted to sit and comb my hair. How funny I remember that.
We put so many things off, saying we have time-Our 20th anniversary he wanted to do something really special, and I said no let's wait till our 25th. Hmmmmmmmm
Never wait!
Never say tomorrow!
I have been thinking so much lately about where I was and where I am now. And all the wonderful friends I have found here who have been so kind to me, and supported me through some very bad times. So I have decided I would share something very special with you all.
John’s final days at a beautiful Hospice House were so great. And they were there for me too. Helping me with each step, picking me up when I fell. At the times I didn’t know what to do they were there to take my hand and guide me. They are truly Angels on Earth. And I can never thank them enough.
The one thing through this all I am glad to have is the memories... And I want to share one with you. It is the time starting when they came in and told me John had a few (2-4) hour left to live: It was like a bell ringing in my head-I knew he was dying but when they put a time on it I freaked! I remember thinking, WHAT DO I DO NOW?
This was about 9:00 am on August 12th and I was alone with John, I shut the door and sat in the chair that for the last 10 days had been my bed. John had stopped talking to me with his voice, but we still knew what was on each others minds by looking into each others eyes. I still knew if he needed a drink, or was uncomfortable in his bed.
We had always knew what the other was thinking, me more than John. John used to say I could read his mind. We could be in the same room and I would answer a question, before he asked. It was scary sometimes.
I sat there not really able to do
anything. Then I sat on the sit of the bed with John and looked at him waiting
for something, anything. We were both so scared, I remember putting my finger
through his hair and he smiled at me. His smile was more like a grin, but I
noticed his lips were so chapped, so I called the nurse to do something. And
then I saw that he needed to have his teeth brushed. So I tried to brush his
teeth but he keep biting the toothbrush and wouldn’t let me have it. God I was
laughing so hard. And in his eyes he was too.
I didn’t want that to end, and I really don’t know how long it went on.
I just remember the nurse saying to me I you need to go outside a have a moment
I will sit with John. Apparently she walked in and I was sitting at the end of
the bed crying. So I did, I went outside and sat down next to the fountain and I
guess it was then I took hold and did what I had to do.
My mom had been there from Kansas City, but had left that morning for home and was going to fly back in 2 days. So I called her first and she was only about 12 hours outside Phoenix, so she turned and started back.
Then I called my sweet daughter Carrie, she was pregnant at the time with out first grandchild and wanted so much to be able to tell John what she was having. Her doctor had done 3 ultra- sounds and each one it could not be seen. She had another one scheduled for the next day. But I told her she needed to come to Hospice and even though she knew why she asked. I just told her to come and nothing else needed to be said.
I think by now my very dear friend Donna who had been there for me through much of this had shown up and I told her what was going on. She was scheduled to leave the next day for a trip to some far off Country, and I know she was going through hell not wanting to leave me, but it was something that she had planned and paid for over a year before. I had a talk with John some days before telling him about Donna leaving and told him that she was my strength and I needed her here for one or the other (meaning his death or funeral). And I think he knew that cause he died about 3 hours before she was due at the airport.
I will never be sure what she would have done had it not happened the way it did. Some say she would not have gone. I am glad she didn’t have to make that choice.
Now I had to call my son, who
through all of this closed his eyes and everything was ok. He had not dealt with
this in any form since it started. The many times John was in the hospital he
refused to go see him. A few times I made him go, but he would just roam the
hospital floors or go outside with us. He said he didn’t like seeing his dad
that way. And when John would come home, Josh who always stayed inside because
of the heat, was never to be seen. He just thought maybe if he
didn’t see it everything was fine. I called my friend he was staying with and
told her she needed to bring him to Hospice.
I even had another friend bring
Apollo, our dog up. And that was a treat in itself. He is a very high strung dog
anyway and he hadn’t seen John in almost 2 weeks. They were best buds.
Everywhere John went he went, so he was very excited. When he came in the room
and saw John, who was in bed he ran to him and licked his face. John scrunched
his face up and man was he mad. I felt sorry for Apollo but John hated it when
he did that even now. Then they took Apollo home. And to this day he still sit
outside at the edge of the grass waiting for his daddy to
come home.
Well, John also has another daughter from a previous marriage and she had already planned flying in the next day. So I called and told her what was going on. I told her I didn’t think she was going to make it. She talk to her husband and said she was going to come anyway. Which was fine.
Well Carrie and Her boyfriend showed up and I told her what was told home. She had grown up very much in the last few months. A month before she chose to quit her job and stay home with her dad through the day so I could still work. And she would go home after I came home. She had been pretty wild until then, but seem to change overnight.
Many times she was the only one that could get John to eat. She always had a way with him and could get him to do just about anything she wanted. One day when I got home she looked really tired and with her being pregnant I was worried. I asked her if everything was ok and she said she I was laying with daddy and he looked at me, I said daddy are you leaving us? She said he took my head and laid it on the pillow and said shhhhh watch the movie. She said before he always said no, I will never leave you guys.
Carrie seemed never to be here long
together. I now know we could not stand to watch each other hurt. But this time
we were here together and had to stay. But we kinda did the same thing when I
was in the room she would go outside or
just walk around and I would do the same. It is very hard to watch someone you
love watch someone they love died.
Then Josh showed up. I remember looking at him and thinking how much he had grown and I had not even notice. I had been so busy with John the last 2-3 months that I missed it. Then I took him to Johns room and outside the door I told him he had to tell his dad goodbye... He said I can’t mom! What do I say? He was gonna lose it any minute and I had to stop him. I took his shoulders and said Josh please baby, just tell him you love him and everything is ok. Just make sure you tell him you love him. He calmed down a little. My poor baby, my heart broke for him.
They had put John in his chair when
we went in the room. When John saw Josh his eyes lite up and he sat up a little
and the glow in his face made Josh able to go into the room. It was what he
needed. But when Josh got over to him it was all he could do to say dad, I love
you. Before the words were out Josh was about to lose it. He was crying, and
telling me I have to get out of here! He pushed past me and to my friend who
brought him there. I looked at her and she knew it was ok to take him home. But
at least he would not have the regret that he didn’t say goodbye.
By now it must have been 1:00 or 2:00. Past the time they had said, John seemed
to be the same to me. He was back in bed and they had cleaned him up like
everyday and changed the sheet. I combed his hair and tried to give him a drink.
But he couldn’t do it. His eyes were locked on mine and I knew he was scared. I
sat with him. I had bought a card for him the last time I was out. It was a
goodbye card. I had it sitting on the night stand, I wanted him to read it, but
he was never able to. So I told him what it was and took his hand and read it to
him. It took a long time to get through it and I think I even read it again. I
am not sure.
I remember I told him how much I loved him and I know he loved me. I told him I
knew how much he hated this world and that I hope where ever he went he found
the happiness he had longed for. I remember telling him I wouldn’t change any
part of our life together. I laughed and said well maybe a few things. But I
told him I had the time of my life. That was when I decided the song I would
play at his funeral.
I read some other cards to him and told him everything would be ok. I caught
myself telling him-How do I make it without you? And Please don’t leave me! I
can’t do it without you! But I stopped cause the one thing I didn’t want was him
to see me falling apart and him not being able to help me. I knew I had to be
strong, and I hated it.
Carrie had called his best friend Larry, and they got there. John had lost track
of Larry about 6 months before he got sick, and about 3 weeks before this John
started asking me for Larry’s number. Well I had no idea where it was. But
everyday he would ask and everyday we would look for it, but never found. Then
about 1 week before John went to Hospice, Carrie called me at work and said
guess who just showed up? It was Larry. He had no idea that John was sick. He
told me later that he doesn’t even know why he came by that day. Carrie tried to
stop him and tell him how sick John was but he went right past her and was
shocked at
what he saw. The Hospice nurse was there and john lite up when he saw Larry.
Larry said John told him where ya been bro? And he sat down next to him and John
told him and John said Bro, I’m dying! Larry said I’ll be right back. He went
into the bathroom and fell into a million pieces. That’s when Carrie called me.
And he was there from then until the end.
There were a few more that came in and said goodbye. But for the most part who
was there was staying till the end. My girlfriend Renee showed up and just kinda
made sure everyone had what they needed. She cleaned up and just was kinda
watching out for us all.
Carrie and I just took turns sitting with daddy. And then at one point the nurse
came to me and said something about blood something and did I want oxygen on
him? I had no idea what she meant. I asked if he was in pain? She said no. So I
said no. John wanted nothing to ever prolong the end.
I was sitting over John talking to him and his breathing starting getting deeper
and harder! The nurse said it was starting and asked if I got the information on
the final hours on death. I had and had read it days before. She asked about
oxygen again and because his breathing was so bad she said it would make it
easier. So I said ok. It was so loud and his breathing was so deep and I was
touching his face and kissing him, telling him it was ok, I was ok. His eyes
were open, we were talking to each other without any words being said.
It was getting close and I knew it. I remember thinking it was nothing like I
thought it would be. I really don’t know what I thought it would be like.
Everyone was sleeping except me and Carrie. At one point I got on the bed facing
John and that is where I was till the end. It started getting bad again and the
nurse gave me a look that I knew meant it was close. Johns breathing was getting
bad, real bad. I started kissing him every time he took a breathe because I
thought it was his last. This turned into a game, that lasted a very long time.
John was fighting it now, Carrie and I knew this so we just kept telling him it
was ok, and we would be fine. He could go. I saw in his eyes he was saying I
can’t leave you alone. You need me, how will you make it alone?
As hard as it was I just kept telling him I was ok and he could go with peace
now. I was begging him not to fight that I was ok and he could leave knowing
this. But deep down I was screaming PLEASE DON’T LEAVE ME ALONE!!!! I had no
idea what I was gonna do without him.
I kissed him so much my lips were numb. At one point I blacked out and next
thing I knew Carrie and me were watching the end. John took a breathe--I kissed
him. John took a breathe--I kissed him. John took a breathe--I kissed him.

Then after who knows how long John took a breathe--I kissed him and I looked in
his eyes and John grinned, winked at me and one tear fell from his right eyes
and he took his last breathe....... And I kissed John for the last time......
Inspirational Quotes
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