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Reply by Tian
17 Jul 2012, 3:27 AM

Dear Winter

Wow! You have had so much to deal with. To avoid being totally overwhelmed I think you have to put a lot of things on the back burner as best as you can. Right now your priority is your mother and you should focus on making her as comfortable as possible. Although she is far from comfortable at the moment, without your efforts it would even be worse. You've already done great. Unfortunately it's hard to see that with her suffering so much.  All you can do is the best you can.  

Your mother still seems relatively lucid. What do the doctors say about increasing the dose of pain medication?

Tian 
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Reply by winter
17 Jul 2012, 3:39 AM

currently doc is on holidays, and so the nurse practioner is on duty, and she is a piece of work....she is a 26 yr, who i think is very overwhelmed, and with all kinds of policies....to deal with...

i am trying to get them to see that she is in more pain than the last wk....and this requires a meeting with about 5 others...and it is so difficult..to get them together....and yet they say they are there are to work for and with u...but hmm...leaves me to wonder...

i am trying to get them to do an increase...but they are just looking at me and asking why, and when i say look at her, are you listening to her screaming with pain....they say this is what happens, and i say yes i know, i have been threw it alot of the last few yrs, but i say, if you just do a little increase to see, but it is we are getting to it.....i even feel her nevre pills need to be addressed...that will be another meeting....my hubby and i just feel so helpless.....

the nurses are great it is the ones that do the increases...that are dragging there heals, i am not asking for a large dose, just a bit to make her comfort, and able to lay and sleep, she is barely sleeping, and this is making things worse....

i guess i will have to keep pushing them to get her comfortable, i just don't think it is right...

since she has been there, 10 people have died, and we have met a number of people, and families, and we feel for them, and while in our own terror.....oh well, time to head to bed, and deal with a new day on the dawn, good nite...

take care..... 
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Reply by Tian
17 Jul 2012, 4:04 AM

Winter, you might want use the "Ask a Professional" feature of this website about the pain issue. Of course they would not be able to say what should be done in your mother's case but they might be able to advise you about what to say to the nurse practioner.
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Reply by winter
25 Jul 2012, 4:57 AM

Cry


Hi all;

Just doing a update....

Things have gotten worse....
On Friday, at 8pm mom took a kidney seizure....ie: coma........
She could hardly breathe, and we thought that was it....to be honest...but she came back it seemed, and she settled down by 11pm Friday nite....

On Saturday, when we got there she seemed stressed and in alot of pain.....we got her pain undercontrol, and then she was able to sorta speak....she was asking for her mom, which has been dead for 36 yrs, the nursing staff felt that she was asking for me......

When i talked to her she knew who i was....and she keep asking me why, and was she dying, and we explained to her what was happening....and she would calm down, and then every 45 minutes like clock work she would ask the same question....and we would have to do it all over again.....

then on sunday we all noticed the change....she then didn't respond to anything....she had slipped into a coma.......

so for that last few days, have been the hardest things......is dealing with her new situation.....you know what i mean....it is so heart breaking......

so now we sit beside her holding her hand, and she clenches them so hard that she was drawing blood, and i thought while holding her hand to put faceclothes in each hand while this would allow her hands to have something in them, and she can't hurt herself...when she clenches them....

Today is Tues, and three days since the Friday seizure...ie coma state, and she is not responsive at all....there is no communication, no nothing.......we are told it could be any day now that mom will pass away...they have told that she is only a shell now, and she is gone, it is just the a matter on time that the body catches up to the brain....it is so hard, to understand......as to how to understand....

i knew things were gong to happen i just didn't think, well that is not true, i knew something was happening because she was in so much pain, and she could not eat, and if she did it would not take long before she would throw it all up.....this happened for about a wk before this happened....

and her pain was so bad, she was screaming for help....my god it was so hard and heart breaking......my hands were tied, and i was unable to help....i would have to leave the room and cry my head off in the hallway....then go back in and be strong and an ox....for her......

now she has a movement in her eye socket, and when a light comes on she opens her eyes....but there is nothing else, she shuts them again.....

there is this sound she makes when she exhails, and it is ah kind a sound her lips are closed, jaw is clenched all the time.......then there is a sound say in the room, it is like she turns her head....
and there is nothing, we just wonder about it....

It is strange we know they are right that she is mentally gone, just a body, waiting to die....

we are trying to hold it together, my hubby and i are so stressed it is unreal....

i know this might sound bad, but i have had to limit my time there since this started, on friday...

the stress has taken a toll , i couldn t stop crying and when i was there, the pain in my chest was so bad that i thought i was having a heart attack, and i had so much pain in my stomach i was unable to drink or eat, so when i was rushed out and takin to my doc in a matter of minutes because of the situration, my doc told me the best was for me to stay away....so i am to stay, untell the pain starts, which is about 2 to 3 hours....which is really hard on me....but it is my health, and there is nothing more i can do for her....when i am there, i do my best to tell her i love her...and i love her so much....i just wish i could have done more....but i have been told that i did more than anyone....and that i did the best and that i should be able to understand that it was her
time...is her time....but that i should be content with the fact that i took the best care of her for the last 6yrs and with all i did for her during this time....if i had not pushed for her transfusions, her blood tests, her appts and surgicial prodecures, and made her to them, all the while having to explain them to her....she would have been dead yrs earlier...

My hubby has been absolutely wonderful during all this...if is wasn't for him, i don't know what either mom or i would have done.....he has supported me so much and supported her by takin
care of her when i was unable....just like now he is going up at 6am and staying for 2 hours and then goin up again at 10am and staying tell 2pm and then going up with me at 6pm and staying with me tell 10pm......

i am feeling better by staying away,...it makes me feel bad, that i am not there with her during
this time....but they say she is not there, and it is fine.....

no family are going up anymore they say they cant handle seeing her like that.....so it is all falling onto my hubby and me.....i just can't believe that they would do this to her....

i understand there thinking....i feel sorry for them and her.

it will or would be nearly 3 months, since i brought her in with renal failure on may 10, 2012.

i am having a hard time, i feel so much guilt.....i know i should not....i did everything i could.....

i got the i love you, i needed...she apolized to me...more than once....i am so glad about also...

she admitted i was right for so many things....right to the fact when dad died that she should have gotten a pet to keep her company, and she admitted that i was right when i said that it was because of her sister that she didn't get it, ....that was nice to hear....even though that was yrs earlier...still it was nice....

she even apolized for the fact she should have moved in yr prior.....and that she loved living with us...and that i was right....she would be happy, she said , I was right, she was happy.....she said she enjoyed so much being with us....she said, she learned alot, i never understood what she meant...by that......they other day, i could not stand it anymore....i asked my neighbour to take out the middle lazyboy out.....so one of the sons asked where do i want it, i just said at the curb...i just could not stand to look at it anymore....mom sat on it from the day she moved in ...

she always sat on it, in between jim and me....everyday when i would get in from the hospital, i would look at it and then begin to cry....cause i would remember and miss her more....if that was possible.....

so anyways, i thought that while i could not sleep, at the moment i would take a minute
and see if talking to everyone, would ease my mind up a bit, about this situation and turn of events......both my hubby and son are snoring, and so is the dog....no surprise there....

i have not heard from my family, i am tired of texting, calling them, emailing them, and then never call me or email me....i feel as though they have forgotten about me....i am always trying to make sure all is well....with them, but no one ever checks up on me....my hubby doesn't understand them....and why they treat me the way they do....

i am always there for them, no matter what.......but i have a hard time understanding....

yes i know everyone has to grief in there own way.......

yes i know none of you know me....and cant say why....they are that way....

i am hurting and yet my mom is not dead yet, we don't know how many more days that she can hold on in this coma state......

i am trying to do little things....cause all my time has been spent taking care of her, i am trying to draw, paint, and even trying to read a book....yet my mind wonders.....but i know i need to do these in order to get in a better mental state....i miss cross stitching, and crafting....but i just never was able to with mom, it was always tam, i need, or tam can you do, or tam can you now i look at my stuff and wonder.....weird.....for 6 yrs....my gosh, i have lost myself during this....

is that possible to lose oneself.....

Innocent


I also, would like to tell you all something.....my name is Tammy, and i have so appreciated all
you who haved given me so much advice, so much guidence, so much patience....and thank
you so much for listening to me....i know i am not the eases person in the world ......

but i love my mom so much....mom if you are with me watching me type this, please know i never gave up....my fingers were crossed....but i knew.....i just wish.....i know

there were a childs wish........

anyways thank you all

sincerely

Tammy

Cry



 
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Reply by Cath1
25 Jul 2012, 5:36 AM

Dear Tammy (winter):

Reading your message tonight touches me so deeply. I hope you know that while you are right, we don't know one another in the "real" world, there is something so sacred about this Virtual Hospice community that allows us to actually communicate our sorrows with each other sometimes more openly than we can with our own loved ones. We share a bond that I treasure and while I cannot explain it I don't doubt it. Thank you Tammy for expressing your feelings so honestly and for placing your trust in us to hear you and to be with you during this emotionally devastating time in your life.

Every word you write as you pour your heart out to us is a tribute to your Mom and to the lifetime of love you have shared together. You are an amazing daughter and I am certain your Mom is thinking and dreaming of you, even while silently waiting for her new and heavenly life to begin. You never need to wonder about how your Mom feels about you, Tammy, as I am sure she realized how complicated her situation was and how well you coped with everything for such a very long time. Your heart is now and has always been in the right place in the midst of every challenge that life sends your way! You have a very strong character and the fact that your heart is breaking doesn't mean you will be broken - you are strong! You stayed with your Mom every moment, even when you had to be home for the sake of your own health, you were distracted by constant thoughts of her, unable to truly relax and concentrate on your own daily life and little diversons like reading a book.

I'm sad to hear that your wider family is not encircling your Mom and you with their presence and support, but I am heartened to know your husband is your constant companion and is like a rock for your Mom and for you! I hope you are now able to sleep so you will have some energy for tomorrow and the days after. Let the the gratitude you feel for the loving words shared between you and your mother comfort and console you to sleep. You are your Mom's blessing and she will forever remain yours. Tammy, we are here with you and will stay with you for as long as you need us. Please let us know how things go and especially, never forget that your heart is not hurting alone.

With affection -hugs- xo - and prayers of peace for your Mom, and you and your husband and family.
Cath1  
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Reply by Tian
25 Jul 2012, 11:36 AM

Dear Tammy

In this trying and exhausting time it is easy to second guess but you have nothing to blame yourself for. You haven't lost yourself in caring for your mother. You exposed a different part and did what the situation called for. But despite all your efforts your mother is dying. So if you had done something differently would she have cheated death? In time you will be able to return to your hobbies and you will always treasure the moments when your mother expressed her love and appreciation for you. And your husband showed that he is more wonderful than you ever thought. It is unfortunate about the rest of your family but we cannot control the actions of other people. Perhaps they will see the world more clearly and come around in time. In the meantime know that we care and are listening and wish you the best.

Tian
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Reply by NatR
25 Jul 2012, 12:51 PM

Dear Tammy "winter",

What a wonderful daughter you are!  Thank you for sharing your innermost thoughts in the night - with the forum.

My heart goes out to you as you deal with all of the emotions you are feeling
You have almost finished the job of caregiving - but you will never lose the connection and love for your mom!

I was glad to read that she apologized to you - that has to help you feel better, knowing you were right about so many things over the years.  That is huge  to hear those words.

Tammy it's time for you to start looking after yourself.  This caregiving role is hard - and gratefully your husband is supporting and assisting you where it's possible.

I am glad you felt connected with us all - and typed messages to us in order to share, let it out and get support back.  That means we are all doing what we are trying to do - listen and help in a small way.

Cath1 wrote an eloquent letter to you, I love the way she wraps words around people to comfort them.

I will think of you today and hope that You and your Mom will soon both be at peace - your mom has lived her life, and now it'salmost time for you to return to your own needs.

Like you Ienjoy crafts and find them soothing to my soul
Is there a way you can take or work on a simpler craft just to calm yourself?  It would help you if that's possible.  

Your mom is dying but her spirit will be with you always.  She loved you for you, you loved her back and honoured her end of life journey.
Others in your family will have to deal with their lack of connection and involvement
You can only be responsible for your actions and I for one applaud you:)
Its complicated and individual  - our decisions in life - but you need to know You did well.
Your mom knows that!
The story about the washcloths in your moms hands touched me, yes a perfect choice.  Strength is amazing even at end of life!

I am sending you special thoughts today
Thank you for sharing yours with us
A hug and a prayer,
NatR 
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Reply by winter
27 Jul 2012, 3:05 AM

today is Thursday July 26, 2012

unbelieveable but mom woke up at noon, on wednesday july 25, 2012.....

i received a phone call from the palliative care unit, and was told someone, wanted to talk to me....mom started talking, she said hi, how are you, i miss you, and i love you.....i just about dropped the phone....i started crying i was in a state of shock...my son came running from his room.....going what, what, mom what is wrong.....mom said i missed you......tammy i am confused...help.....

it was like a really crazy dream......

we were up there about an hour earlier....and nothing....we has went up at 6am, cause i could not sleep so we grabbed a coffee and headed up and nothing...i talked but she sleep.....we stayed for 4 hours and i kissed her goodbye and said i love you, and we will be back up later....

well when i got that call at 4pm, well i cried all the way there, it seemed like we fly instead of driving........

my son was in back crying saying i don't understand i dont understand.....i and just kept telling my hubby i told you i thought she was in a kidney coma, a seizure, and that put her    in a state of coma....

we seemed to run almost to the elevator and to her room.....

when we got in her rm, we walked in almost out of breath..and we were really afraid......that when we got there that she would not be awake, but to our amazement she opened her eyes, and said hi...there......well my son and i cried, and we were scaring her with our crying....

she keep looking at us, she just keep starring at us.....she was trying to figure out what to say to us.....so then for the next 5 hours none stop what happened?  why it happened?  is it going to happen again? then the dreaded question am i going to die?

my son just couldnt stop crying...... my hubby had to take him home, but before he left he wanted a picture with her, and in this picture they are both smiling, it is so beautiful...... just so surreal.....

so she ate a can of tomato soup, on wednesday.....and then today she had a bowl of oatmeal, for breakie, and then she had lunch, and she had a roast beef sandwich with mashed potatoes, and vegs, she ate we could not believe it, plus she had a bowel movement and she had not ate or drink or bowels, in over a week, she floored the nurses....all together....

thank god, i had read all about this, kidney coma, seizure thing or i would have beem thrown for a friggin loop...you know....

cause they told me that was it, that she would never wake up again, and here she is wide eyed.....

but she is very different in this state....she is almost child like....in this state, she does not care if anyone is there and is in a right confused state.....she is no longer really asking...questions....

we have been telling her that no crying, only happy thoughts....and when people are there to talk happy....and it is working, she is happier....with the no tears....no happiness....

she will look at you....and then stare out in space, as if she is locked in a mind.....that can't think....

she is like a blank window....or like a clear white plate.....waiting for the paint....

if that description makes any sense to you...all.....

so we are told that, mom could die, any minute, or take another seizure, and go again into a deep sleep, but this time she will not wake up.....

god this is so friggin hard...you know...one minute i am telling her i love her and crying....and the next she is awake....and saying i love you....

it is just sad, and it is so hard to believe....have any you every had or heard of this...happening....

i mean, isn't it, just so emotionally hard, to handle....

i am so hurting, and i just want to ....well i don't know ....if i finish that statement....it means mom will be gone....

i myself well know she is dying, i am having so much heart ache...with this situation....

how do i explain it to my son, when i am trying to explain it to myself, when no one has every seen anyone come out of this kind of state...before......

i understand it, i mean medicially you know i read all about it.....


anyways this is the latest development in moms journey...

take care all

and thank you all

you are all so wonderful, and so caring....

you all seem to know what i need to hear...and you are able to tell me what i need to hear from family, but they are not able to say to me.....so i so need to hear it....

i don't question what i have done, i question my mothers doc, i feel has lied to me every turn we have made in this journey......but i don't have any proof, for all was word of mouth, i wish i had a tape recorded it...

i did all i could, i tried every means i had available to me....

i know i can no longer think about that....which i am trying to do....

i don't know if i could do my craft up there....but my wonders way to much....i can't even read...a book....

so anyways it is time for me to try to get some sleep, it is 11pm and i am going to try to read a book for an hour...and back up there at 5am.......tomorrow.....hoping to see her open her eyes yet one more time...

if it is possible, not sure though, she was getting more tired, and wanted to sleep more than chat....she asked me if you could go to sleep and i said yes, and then said please do not wake me up anymore.....i said i wont if you dont want me to.....she said no i am done, i just want to sleep....i am oh so tired, and i done, i can't go on ....i just want to sleep, i love you, l love you, thank you....then she went to sleep....

it almost sounds as if she is saying good bye....you know......

it makes you wonder right......

anyways i know i am going on and on.....sorry....my friends, and extended family.....good nite, and prayer to all of you .....hope you all sleep well....someday i will sleep soundly again........

good nite

 
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Reply by Cath1
27 Jul 2012, 3:24 AM

Dear Tammy (winter):

It is amazing how a person can rally back for a bit before the end finally takes them to rest. When my Mom was close to death she had some moments where she suddenly became lucid and able to speak. Her second wind was not as dramatic as what your Mom experienced, but it does happen. I think you just have to keep approaching every new day as you have been which is not knowing quite what to expect next. It is a very exhausting experience to live through the ups and down, the twists and turns, but the situation seems unpredictable so there is so little choice but to expect the unexpected.

I am so happy for you that the last words spoken by your Mom to you tonight were words of comfort and love and deep gratitude for you and your family. I hope with all my heart that when your Mom closes her eyes and enters into her final sleep that you will always remember her words that she gifted you with tonight. You sleep now and remember, we hear you, Tammy and we all care! Thank you for sharing more of your Mom's journey and yours with us! You are not alone.

With affection -hugs- xo and continued prayers for your Mom and you and your husband and son.
Cath1
    
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Reply by Tian
27 Jul 2012, 10:53 AM

Dear Winter

Life is full of surprises. You've had more than your share of bad ones. Now you've had a very good one. Treasure it. What's next? Who knows. Hang in there.

Tian

 
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