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Author Topic: Mom might get to come home  (Read 1794 times)

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Offline wolfter

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Mom might get to come home
« on: April 14, 2014, 11:28:05 PM »
Mods, I know this is a continuation of a previous thread but I regretted my tone there.    ;D

We think she might get to come home tomorrow.  She was admitted Thursday morning through the ER.  I managed to resolve several decades of issues knowing time is limited to follow through with a few goals. 

I'll be updating more later and wanted to thank you all.  Over the last couple of days, I've devoted myself to bleaching her home.  I know she hates that smell (my drug of choice  :o) but she only has a few white blood cells. 

It's been a lot to digest and took a while for all of us to accept it.  We held on to hope from day one, but her particular form of Leukemia is 100% fatal.  Average expectancy is 2 years.  We all know, stats don't mean shit when it comes down to individuals. 


Thanks again all, I enjoy discussing nothingness sometimes and I appreciate you all for that ability here.   

greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline zach

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Re: Mom might get to come home
« Reply #1 on: April 14, 2014, 11:30:33 PM »
raise a solo cup to moms!

Offline Theyer

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Re: Mom might get to come home
« Reply #2 on: April 15, 2014, 12:55:33 PM »
Have a happy reunion in that clean house,
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Jody

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Re: Mom might get to come home
« Reply #3 on: April 15, 2014, 02:44:47 PM »
You're a good son Greg and I hope your mom's time left will be well spent with you. Hugs to you and remember to take care of yourself as well.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline drewm

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Re: Mom might get to come home
« Reply #4 on: April 15, 2014, 03:02:11 PM »
All the best!  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline britchick

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Re: Mom might get to come home
« Reply #5 on: April 15, 2014, 04:40:57 PM »
Wolfter,

Im sure that your mum will appreciate what you have done for her and im glad that you have been able to resolve things with her.You also need to rest and look after yourself too.

britchickxx

Offline wolfter

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Re: Mom might get to come home
« Reply #6 on: April 15, 2014, 09:51:08 PM »
They decided to keep her longer.  They have determined that she has internal bleeding and can't figure out where it's coming from.  They're going to do some sort of nuclear testing to see if they can figure it all out.

thanks all
greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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Re: Mom might get to come home
« Reply #7 on: April 15, 2014, 10:03:29 PM »
I'm very sorry Greg ... Hugs for mom .

Offline wolfter

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Re: Mom might get to come home
« Reply #8 on: April 15, 2014, 10:16:49 PM »
I'm very sorry Greg ... Hugs for mom .

Thanks Jeff.  You're probably the person who understands her illness the most.  I had a long conversation with my aunt yesterday.  She's the nurse who recently visited and went to visit with mom's doctor.  During our conversation, she wanted to make sure that I completely understand what's happening.

I recognize that it's rapidly approaching and have reached the acceptance stage.  The denial thing was too exhausting anyways.  And because my siblings are still holding onto hope, I'll be the one who once again is the realist and make plans.  I'm obviously quite OCD about prior planning anyways.

My aunt has graciously agreed to make all the connections for palliative hospice care so we can get her home.  Mother has never discussed her final wishes.  Even when I've broached the subject seriously, she simply says we can toss her over the riverbank in Meigs county.  I think it's terribly sad when someone is dying, that they can't broach the subject and make their final wishes known.  I had to make my final plans while I was in my mid 20's as I wouldn't want to distress anyone with that torture.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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Re: Mom might get to come home
« Reply #9 on: April 15, 2014, 10:28:16 PM »
Its a tough situation saying good bye .... I guess your mom isn't comfortable discussing these things ... went through the same with my dad . The best you can do is make her last days comfortable and honor how she chooses to spend them .

I will be keeping you and your mom and family in my thoughts .

Offline intaglio

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Re: Mom might get to come home
« Reply #10 on: April 16, 2014, 08:42:51 PM »
Sorry to hear this about your mom.

Even when I've broached the subject seriously, she simply says we can toss her over the riverbank in Meigs county. 

From my POV, when relatives have said this, they have made a decision: what happens after they die is no concern of theirs. So that frees you up to do anything any which way you desire. It also takes you off the hook when idiots uhh, concerned relatives question your decisions. You can say, "she wanted it this way" and you'd be telling the truth.

Enjoy your time with her. Like you say, patients are fond of proving medical experts wrong. You only have to look on here to see the truth of that.
Reality is frequently inaccurate.

Offline wolfter

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Re: Mom might get to come home
« Reply #11 on: April 17, 2014, 08:59:03 AM »
She is doing reasonably better but the prognosis isn't changing.  Over the last couple of days, she has given me access to her financials so I can take care of her bills and such.  I found it odd that she prefers that I handle all of that.  I've always been the least closest with her emotionally.

Her vehicles tags had to be renewed by tomorrow so I again took the lead.  I did the POA form from the DMV website.  She expected that I'd have to bring it all the way down to where she is hospitalized for her to sign it.  I explained that I'd sign it. She was worried the signature wouldn't match.....   I explained that I had mastered her signature by the time I entered highschool.  :)

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Theyer

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Re: Mom might get to come home
« Reply #12 on: April 17, 2014, 12:33:37 PM »
Loved The bit about the signatures

Go as gently as pos, I like Aunty , keep posting .
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Mom might get to come home
« Reply #13 on: April 28, 2014, 05:34:33 PM »
Had another scary situation this morning.  Mother had the absolutely best rebound for the past week.  She indicated she felt the best she had since her diagnosis.  I saw her being productive the entire week.  I checked with her before I went to work last night and she said she still felt fine.  I explained then that I was going to my place after work and that I'd check in this evening with her.

Thank goodness, I had that nagging doubt about something so I stopped by to check on her anyways.  I found her slumped over holding her head and in complete distress.  Incoherent and confused as hell.

I immediately took her to her doctor's office and they promptly checked on her.  Within minutes she became so distressed that the nurse immediately screamed for the receptionist to call 911.  I wanted to drive her to the hospital and they said no, she had to go by squad.

After running her blood tests, they determined that all her numbers bottomed out and did immediate transfusions again and she appears pretty stable.  I was terrified and truly thought for the first time since her diagnosis that she was leaving us.  She was sleeping nicely when I left and I'll probably head back that way shortly.

I probably owe a few people in our communities some apologies as quite a few people just plain pissed me off;

It started with following the squad.  They were obviously speeding down the 2 lane road with lights and sirens blaring. I was staying right with them but leaving plenty of room between us as there was a horrible rain storm.  An ignorant ass woman managed to pull out between us and proceeded to drive under the speed limit.  This road doesn't allow many opportunities to pass.  I normally don't have road rage but I ran the truck right up on her ass.  She finally pulled off as I wouldn't stop doing it.  :)

So I managed to get to the ER about 5 minutes behind them and they had already taken her straight back to a room.  When I inquired where she was at, I was told that I had to stay in the waiting area until they finalized all the paperwork.  I politely explained that if they didn't take me to her immediately, that I'd go look for her.  So quickly agreed and led me to the rooms.  She asked a nurse which room my mother was in and she checked the paperwork and said room 4.  We go to room 4 and it's another old lady.  She actually asked if I was sure that wasn't my mother because according to the paperwork it was.  REALLY?  Pretty sure I know my mother after 48 hours.

Then it only gets worse and my attitude was on full alert.  They're doing her vitals and her BP was 47 over 20.  The nurse looked at my mother and asked; "honey, does your blood pressure normally run that low?"  I couldn't hold back and answer for my mother.  I simply said that nobody's bp normally runs that low.

Then, they came in to draw blood. I explained that her doctor had already drawn blood and she packed it correctly and sent it along with the medic and ordered the medic to deliver it along with the patient. After searching, no blood was to be found.  It was agonizing watching them try to hit another vein and it pissed me off as there wasn't a need.  I asked the ER doctor about it when he came in.  He said they still hadn't determined what happened to it.

If they would have taken my MP at that moment, I'd have probably been admitted.  I go out into the hallway and decide to determine the chain of command.  I called the fire department and he was able to tell me that a certain records person (can't recall now the correct term) signed for it.  He also indicated that the charge nurse was also discussing my mother with them.  I go to the records person and she immediately said, "oh yeah, I sent that to lab immediately".  I inquired why no one else knew that.  She said the charge nurse was aware of it.  I then went to that nurse who had a deer in the headlights look.

I solved the riddle in less than 5 minutes what all those professionals couldn't.  In the meantime, another nurse who overhead the conversation went to my mother and was telling her that THEY located the missing blood.  I came into the tail end of the conversation and promptly explained how I tracked it down.  I discussed it was the doctor and explained that this situation should be used as a teaching experience. 

The good news is that they got the results back quickly on the original blood.  I made sure they understood that I'd also be reviewing her bills and she has better not be charged twice for their lack of professionalism.

Long I know, just having a stressful day and needed to vent and my mother doesn't like this sort of stuff posted on FB.  :)

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline BT65

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Re: Mom might get to come home
« Reply #14 on: April 29, 2014, 03:36:44 PM »
OMG, nothing like doing the hospital's job, aye?  How frustrating, I don't see how anyone could have held their cool during all that.  I'm glad they finally got it all figured out, and got your mom treated. 

Is she still in the hospital, or is she home by now?  {{Greg}}
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

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Re: Mom might get to come home
« Reply #15 on: April 30, 2014, 02:21:22 PM »
thanks Betty.  I'm quite surprised that they were able to get her steady enough to come home.  Just brought her home after stopping at my favorite littler diner in Lancaster.  She actually ate an entire meal.

I discussed with my siblings the probability of transferring her care to a different location.  It's not even the damn leukemia that's wrecking havoc but rather that she is loosing blood and nobody can determine where and why.

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Theyer

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Re: Mom might get to come home
« Reply #16 on: April 30, 2014, 04:15:31 PM »
Your dreadful account reminded me off one 24 hour period , You dealt with it very well indeed, I on the other hand was told the Police would be arriving ----- they where not which made my reply off GOOD , pretty lucky.

We did however do all we could to make sure our Mother did not return to that Hospital in Reading , Berkshire , England.

Some hospitals for what ever reason ,s are crap.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Mom might get to come home
« Reply #17 on: May 26, 2014, 07:44:41 AM »
Mother spent 2 weeks in the hospital and insisted they release her Thursday morning.  She had a cigarette lit before she even got parked in her favorite chair.  We had lots of family from all over the country here to visit with her.  She had an absolutely wonderful time Friday.  Took a nice walk and went for a drive.  She didn't want to die in a facility and we were worried that she'd suffer badly when her blood counts plummeted.

She was laughing and having an enjoyable evening so I felt comfortable enough to get some sleep since I had to be to work at 2:00 am.  I checked on her at 1:30 and found her in the midst of an event.  The squad promptly came and they air lifted her to Columbus.  Still not in agreement with that since she was already gone by the time the squad got here.

They brought her to and did all the necesary artificial processes to keep her alive until she arrived in Columbus.  We were met at the front door by a social worker who promptly took us into a consult room.  Of course I already knew what happened.  She had a severe brain hemorage that pretty much was an instantaneous brain death.  OK'ing the removal of all the tubes and such was absolutely the most heart wrenching thing I've ever done.

It was quite peaceful and the room was very solemn filled with all her sisters, children and a few grandchildren.  Her terrible struggles are over now.   
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Mom might get to come home
« Reply #18 on: May 26, 2014, 07:50:02 AM »
Many probably haven't dealt with the issue of social media and I hope people start thinking about an important issue.  In the hospital, we all recognized that no one should post anything on-line until we had an opportunity to contact all her family and friends.  There were even some grandchildren that we hadn't been able to reach.

My aunt's grand daughter promptly posted about her passing on FB.  This happened before we even left the hospital.  Our phones started rining like hell.  I know it only seems logical in this day and age to post immediately, but in situations like this, it is always best to wait until the immediately family has posted first.

No one should EVER find out that a loved one died from logging into their computer.

greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Buckmark

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Re: Mom might get to come home
« Reply #19 on: May 26, 2014, 08:32:53 AM »
I'm so sorry to hear about your mother's passing.  I can only imagine your sorrow, and how much you miss her. 

Regarding the use of Facebook to communicate the death of a love one, I agree that it's not how I would like to find out that kind of news.  But in this day and age, it's probably inevitable that someone in one's network of loved ones would post about it on Facebook.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Online Jeff G

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Re: Mom might get to come home
« Reply #20 on: May 26, 2014, 08:46:20 AM »
Greg ... I'm so sorry for your loss . Please know you and your family will be in my thoughts .

Offline Jmarksto

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Re: Mom might get to come home
« Reply #21 on: May 26, 2014, 09:17:12 AM »
Greg; 

My deepest condolences - may the warm memories provide some comfort during this difficult time.

Sincerely,

Mark
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline J.R.E.

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Re: Mom might get to come home
« Reply #22 on: May 26, 2014, 10:10:01 AM »
Greg,

You and you family have my deepest condolences.  I am very sorry.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline bocker3

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Re: Mom might get to come home
« Reply #23 on: May 26, 2014, 10:13:46 AM »
Greg,

So sorry to hear about your mother......  You are both in my thoughts.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Basquo

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Re: Mom might get to come home
« Reply #24 on: May 26, 2014, 07:44:59 PM »
I'm sorry for your loss, Greg. She is no longer hurting. Time to take care of you now.

Offline wolfter

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Re: Mom might get to come home
« Reply #25 on: May 26, 2014, 08:34:38 PM »
thanks all.  As any of you that have lost a mother knows, it's a whirlwind of emotions.  Until she became sick, her and I were the least closest.  I'd actually say we didn't really get along that much.  I'm grateful I was afforded the opportunity to spend both great and horrible times with her.  We worked through many years of misunderstanding and turmoil in a mere 8 months.

And once again, Gary's message resonated constantly.  You can have complete love without having complete understanding.  I was also enlightened by her absolutely fabulous sisters who have been her for the last several weeks.  What I took for a complete lack of maturity, was actually what endeared her to everyone.  She didn't take life seriously and insisted on enjoying it and living on her own terms...which she definitely did.  Even down to insisting she was going to die on the wretched recliner.

After having a house full of people for several weeks, I have my work cut out.  The place was absolutely wrecked and since I'm suddenly without anyone else around, I'm grateful to have something to focus on. 

I might need to start a new topic about planning for death as it's the one universal we all experience.  Because she refused to address the topic other than to tell us to simply fling her corpse into the Ohio River, nothing was planned ahead of time.  It's such added grief to be making those difficult decisions in the time of mourning.

The family all left Saturday to allow us 4 siblings the opportunity to be alone and discuss everything.  None of them have planned anything and didn't plan on it.  I simply asked them if they really wanted their children to be suffering like we are.  I saw the sobering expressions.  Perhaps I'm so not afraid of death since I've been expecting it for so long?  I had to make those difficult decisions in writing when I was but a mere child myself. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jody

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Re: Mom might get to come home
« Reply #26 on: May 26, 2014, 10:43:58 PM »
Greg, I'm very sorry to hear of your mother's passing.  I'm sure she knows she had a great, caring son.

Hugs, Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline zach

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Re: Mom might get to come home
« Reply #27 on: May 26, 2014, 11:00:19 PM »
 :'(
hugs man

Offline tednlou2

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Re: Mom might get to come home
« Reply #28 on: May 27, 2014, 12:39:14 AM »
Greg,

I just wanted to share my condolences here as well.  Hugs. 

Offline BT65

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Re: Mom might get to come home
« Reply #29 on: May 27, 2014, 05:35:59 AM »
I'm so sorry, Greg.  I totally understand, I've lived through it.  You will be in my thoughts and daily anxieties.   :'(
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline britchick

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Re: Mom might get to come home
« Reply #30 on: May 27, 2014, 06:11:16 AM »
Wolfter

(((I'm so sorry for the loss of your mum.))))
I'm sure that she was very proud of you and all the time that you got to spend together.

britchickxx

Offline phildinftlaudy

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Re: Mom might get to come home
« Reply #31 on: May 27, 2014, 07:57:47 AM »
Greg:
My sincere condolences -
I know that your mother appreciated you being there with her.
I definitely understand what you mean by social media - I went through the same thing.... I started limiting my posts (but I was "damned" if I did, "damned" if I didn't ---- not posting meant getting endless phone calls while trying to deal w/ hospitals, emotions, rest, etc..... posting usually ended up w/ the same result)  Ultimately, I decided to limit the posts and to make sure that immediate family and those in regular contact knew what was going on prior to posting anything...

You have definitely been in and remain in my thoughts and prayers.

Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline wolfter

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Re: Mom might get to come home
« Reply #32 on: June 01, 2014, 07:13:47 AM »
The difficult task of dealing with her belongings has begun.  In many ways, this is more emotional and difficult than dealing with her imminent demise.  I never realized that she kept every single card, letter, news clipping and such that pertained to her family.  Sorting through it all and trying to return each of these piles to the correct family members.

I didn't know she kept every grade card and I enjoyed reading about myself.  I'm confused how every single grade school teacher didn't recognize that I had ADHD so badly.  :)  Those comment sections were so telling and a common theme existed year to year.  Something must have happened automatically as I suddenly became a joy to have in the classroom exceeding all expectations.

Decided to go ahead and move into my new place which means working like hell the next couple of weeks to complete the rest of the work.  It would have already been done if I had assistance from siblings during mom's extended illness.  I should be bitter with them but have changed my mindset.  It allowed her and I to finally communicated and resolve some long standing issues. 

Understanding where people are coming from helps to resolve things. 

thanks for all the kind words....it truly meant a lot. 

greg

edited to add;  I've been lax on supporting others of late but you've all been in my thoughts.  I promise to do better in the future.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: Mom might get to come home
« Reply #33 on: June 01, 2014, 07:46:31 AM »
I commented on FB but will reiterate my condolences here. Glad to hear you aren't getting to weighed down by going through all of her things. I would find that hard to do.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: Mom might get to come home
« Reply #34 on: June 01, 2014, 08:27:11 AM »
Take care of yourself Greg ... you have been through so much .

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Mom might get to come home
« Reply #35 on: June 01, 2014, 08:35:18 AM »
Greg my dear, big hug ,you made your Mothers last years have so much more quality in them and steered your way through family dynamics like a diplomat , please make sure you get some quite time for yourself , an hour or two regularly , your internet family will be holding you in there thoughts, I know I am
love Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Mom might get to come home
« Reply #36 on: June 01, 2014, 08:45:56 AM »
My forums family has probably been my greatest mental savior.  I could express things here that allowed me to process the situation. 

I'm sitting here enjoying my coffee, trying to figure out how to totally waste the day.  Probably go golfing since the weather is beatiful today.  Have to try and have another great chip shot like the last time I golfed.  I've had small chips before, but I chipped one in for a birdie from about 40 yards out.  In honor of the greatest golf tournament around....the Muirfield Classic.

For you golfers, that's the course Jack built.  :)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

 


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