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debbie-b
03-12-2012, 07:09 AM
This is something I have read in a german lupus forum, which I think is the best thing I have gotten out of that forum. People there are not very friendly, point out spelling mistakes, tell people not to be a baby about pain and suck it up. But that is a different story.
They do something ( the people that care), which I think might be a good idea. They light a candle for people in need, for people who are going through alot of emotional or physical pain.

I would like to start and light a candle for Rob and his dad and the rest of his family.
And yes, it means actually lighting a candle.

Debbie

If it is a bad idea, just ignore it please.

rob
03-12-2012, 08:02 AM
Thank you Debbie.

It's a simple gesture, but it means so much. It really does.

I just left an update on Dad's condition in the other thread. I wish there was good news to report, but there isn't.

Thank you for thinking of us, it really does help.

Rob

magistramarla
03-12-2012, 03:39 PM
Debbie,
This is a sweet idea. I'm not a religious person, but having a candle burning to remind me to think of Rob and his family throughout the day is an excellent idea.
With all of the many folks we have here at WHL, we could have many "points of light" burning in the family's honor around the world.
I'll light one anytime I'm here at home.
Hugs,
Marla

Saysusie
03-12-2012, 04:39 PM
thank you for caring, for lighting a candle and for reminding us to care. i am keeping rob, his father and his family in my prayers. this is, i am sure, a very difficult time for all of them.
peace and blessings carlotta

rob
03-12-2012, 05:09 PM
You people, are simply awesome.

I'm taking my laptop with me tomorrow when I go to visit, and I'm going to read to him all the well wishes and prayers in this thread, as well as the others. I know it will make him smile.

I don't know how to thank you all. Words are not enough.

Rob

tgal
03-12-2012, 05:20 PM
To my brother in arms.

You know I usually keep my thoughts between us privately however this thread brought me out. What a wonderful idea, Debbie. Rob and I have spoken several times about there being no words in a situation like this. Even now I find tears but few words. You know that I am not religious person but you, your dad and your entire family stay in my thoughts constantly. From this point on you will not only be in my thoughts but in a candle on my counter.

Never forget that I am here for you if you ever need me.

DrinkofWtr
03-12-2012, 06:01 PM
I am lighting a candle for your dad, Rob.

steve.b
03-12-2012, 09:23 PM
rob,
when you talk to dad......
please say hello from his many friends in australia.

Nonna
03-13-2012, 03:15 AM
My candle is burning. My hopes and prayers are flowing

My the Lord walk with you all
Toni

rob
03-15-2012, 01:21 PM
Hi everyone,

I wanted to let you all know that I've been reading all of your get well messages in this thread and in others to my Dad. I'll read a half dozen or so to him each day, and it brings a huge smile to his face. Although he can't talk, he will point at my laptop and mouth the words "Say Thank You".

So on his behalf, Thank You. Thank you all so very much. Your words, prayers, and well wishes have had a very real, and very tangible positive effect.

As far as his overall condition, it has not changed. However, his living situation and level of care is about to improve in a big way. Today he's being transferred to the ME State Veterans Home. My sister is the administrator there, so his care will now be under her direct supervision. It's one of the best veterans facilities in New England, and is so much more comfortable than a cold clinical hospital room. Dad is very happy with this decision, giving us two thumbs up when asked if this is what he wants.

Thanks again everyone, for everything you do,

Rob

magistramarla
03-15-2012, 07:52 PM
Hi Rob,
Your Dad is very lucky to have a loved one who is in the right place at the right time for him.
He must be stabilized, since he's being transferred. I'll take that as a step in the right direction.
Please tell him that we're all thinking about him and lighting our candles until you tell us that he's back to his usual spunky self again.
Take care of yourself, too!
Love & Hugs,
Marla

rob
03-16-2012, 07:06 AM
Hi Rob,
Your Dad is very lucky to have a loved one who is in the right place at the right time for him.
He must be stabilized, since he's being transferred. I'll take that as a step in the right direction.
Please tell him that we're all thinking about him and lighting our candles until you tell us that he's back to his usual spunky self again.
Take care of yourself, too!
Love & Hugs,
Marla

Hi Marla,

We're not really sure that he's stabilized. At the hospital, Dad was moved from room to room, transferred from one dept. to another, and never saw the same Dr. two days in a row. None of the staff were communicating. We were getting conflicting information from each new doctor. There was no logic, rhyme, or reason in their methods, and they were making all kinds of mistakes with his meds, with his very specific meal menus, and the list goes on and on. There was zero consistency. Basically, it was one big cluster f**k.

Dad is now settled into his new room at the Veterans Home. He will not be moved from one room to another, or from one dept to the next. He will have the same Dr. everyday, the monitoring of his vitals and meds will now be done properly, and all of the other needs and aspects of his situation will have what they didn't have at the hospital-CONSISTENCY.

My sis will watch all of this like a hawk, and I pity the person who pisses her off.

Rob

debbie-b
03-16-2012, 07:14 AM
Hi Rob,

It sounds that this move is what your dad needs.
You don't want to have idiots taking care of a very sick man. It is pretty sad, to have this kind of " care" for a loved one.
Your sister must be like me, mess with my family and you will suffer, boy will you suffer.

Debbie

PS The candle is still burning.

tripLexie
03-16-2012, 07:36 AM
I lit three candles last night for your Dad, Rob. Prayers continue to be sent y'alls way.

DrinkofWtr
03-16-2012, 07:34 PM
Sounds like a good move for your Dad, Rob. He will be taken care of properly and be much more comfortable. It's great your sister is an administrator there. Take care, Rob and the best to your Dad.

rob
03-18-2012, 01:20 AM
Dad's surroundings, and quality of care are far better now. Everything is in place for him to start getting better.

But he's not getting better. His breathing is more labored everyday, and his body's ability to put oxygen into his blood decreases with each passing day. He's slipping away, and there's nothing anyone can do about it. Every moment that he's awake, he's suffering terribly. He's so scared, I've never seen that in him before. Each day we hope that he'll finally get over the hump, and take a turn for the better, but it hasn't happened. He can say a few words very softly from time to time, and he told me he doesn't think he'll ever leave this place, meaning, the Veterans Home. He believes he's going to die.

I told him no. I told him that he will get better. NO giving up, you are going to beat this. I don't know what else to say or do.

steve.b
03-18-2012, 03:16 AM
i have seen my relations on both sides of this fence.
one of the best things i can suggest is to be strong infront of dad.

if he can keep a positive attitude, all things are possible.
if he really deep inside of himself believes it is over ........

no matter how many times you see or hear about this time in someones life,
it is impossible to find the right things to say.

i hope dad remembers how to live !!!!!!!!!!!!!!!!!!!

magistramarla
03-18-2012, 02:10 PM
Rob,
Steve said everything that was in my heart, and said it beautifully.
We went through all of this with Jeff's Mom in 2006.
I hope that Dad finds that old fighting spirit, and makes a comeback, but if the pain is so awful that he has given up, I hope that you can understand and support him. That was the conclusion that we came to with Mom.
Stay strong, Rob. Take care of your own health, too - that's important. We're all here for you, Rob. We'll be lighting our candles and waiting to hear from you.
Love & Hugs,
Marla

DrinkofWtr
03-18-2012, 05:59 PM
Rob,

My father fought hard too, and loved life to the fullest, but his body just gave up on him. He had pneumonia at the end, and other problems. His breath was so belabored. But I didn't give up and he didn't either until the very end when he couldn't fight any longer. Then I knew he went to be with God and those who had passed before him that he loved. That was my comfort that kept me going.

rob
03-18-2012, 08:11 PM
Hello Everyone,

Well, at least tonight he's fairly comfortable. They upped the pain and anti-anxiety meds, so he's not suffering every waking minute like he has been. He's pretty confused. Talks to people who aren't there, and he's seeing all sorts of things. But, he'll catch himself and say oh, I guess I was seeing things again, so he is aware of it. I told him he might as well have fun with it, and conjure us up a couple of hot babes and a round of cold beers. That got a good belly laugh out of him. The staff, and the facility are just awesome. They are making a very difficult period bearable for all of us.

One thing about my Dad, is that he has always valued and trusted my opinion, more so than probably anyone else. If I tell him he's going to get better, and that he's getting out of that place on his own two feet, he believes me. I tell him this many times each day. Do I believe he will? Even though I get discouraged and let doubt creep into my thoughts, I have to believe he will. All that matters though, is that he knows we are all there for him all day, everyday, and that he WILL get better.

Something happened yesterday that really helped me with my own state of mind. Dad was scheduled for a chest X-ray, so they had the X-ray Tech bring one of those portable X-ray machines in so Dad wouldn't even have to leave his room. The X-ray guy looks at me and asks if I'll help him. I say sure. Next thing I know, he's got me putting on the lead vest and he's teaching me how to hold the film cartridge just right so the image isn't blurred. We got dad sitting up, and I held the film while the X-ray guy did the zapping. Dad got a real kick out of it, and after sitting around wishing there was something more I could do to help him, I got to take part in what can be a rather uncomfortable process, I actually helped out, and made it easier for him. It's amazing how this one thing really put me into a better, more positive state of mind.

Anyway, my shift is over for tonight, I'm home, and ready to get some sleep.

The battle will continue tomorrow...

Rob

kim,l
03-18-2012, 09:33 PM
dear rob keep up the positive outlook i lost my father 6 years ago and my father inlaw 11 years ago it can be very draining on anyone just keep his and your spirits up and take one precious day at a time luv and hugs kim

magistramarla
03-18-2012, 10:56 PM
Rob,
Even tiny steps are good. We all know that being comfortable and more relaxed can help us to concentrate on healing. I hope that it works for him.

"Dad got a real kick out of it, and after sitting around wishing there was something more I could do to help him, I got to take part in what can be a rather uncomfortable process, I actually helped out, and made it easier for him. It's amazing how this one thing really put me into a better, more positive state of mind."

Boy, do I ever get this sentiment! I felt that same feeling when I was a midwife's assistant and helped to bring a new life into the world. It makes you feel great to have a part in that. It also happened to me once when I had to assist my vet. My cat had ripped her belly open on a barbed wire fence. The doc met me at the clinic after hours, and when he saw how extensive it was, he wanted to stitch her up right away. He knew that I was a midwife's assistant, so he had me to scrub and assist. Even though it was my baby on the table, I was awed to be able to assist and felt really good as I watched her heal over the next few days. Karen can probably tell you about that feeling, too.

Keep doing what you are doing, my friend. You are probably your Dad's best supporter and advocate. He's in a good situation to begin to heal now.
Hang in there.
Love & Hugs,
Marla

DrinkofWtr
03-19-2012, 10:29 AM
Just keep on helping and encouraging him, Rob! He is a fortunate man to have a son like you in his corner.

running girl
03-19-2012, 03:14 PM
Thinking of you, Rob.

tgal
03-19-2012, 10:07 PM
Keep those candles lit. They need it tonight.

We love you and are here for you

Saysusie
03-19-2012, 10:41 PM
Rob;
I am glad that you were able to feel uplifted in the act of helping your Dad and the technician. I agree, sometimes the tiniest efforts reap the biggest rewards. You Dad obviously gets strength from you and his respect for your opinion probably goes a long way in his own outlook.
I remember that I would often ask my daughter if she believed, as I believed, that she was going to get better, because I had no doubt that she would. She would always answer "yes". I do believe that we give our strength to those whom we love and who need it. In return, they give us their faith which only serves to increase our strength. So, it is a symbiotic relationship that does wonders for each person.
I am, as always, praying for your Dad, for you, and for your family.

Always
Saysusie

rob
03-20-2012, 03:11 PM
Update-

Yesterday, just before lunch, Dad went into respiratory failure, and his left lung, which is his good lung, basically collapsed. He was taken via ambulance back the ER at the hospital. Right now he's in the ICU. They needed to put a scope down into the lung to see what's causing the collapse in order to find a course of action to fix the problem. But to do that, they would have to intubate him. However, there is a significant chance that once he's intubated and on a ventilator, that he could not survive being taken off of it.

We had to ask him questions, about his wishes, should certain things happen. At that point, any semblance of composure I may have had, just crumbled. Since you cannot talk once intubated, we had to face the fact that this could be the last time he's ever able to speak to us.

They intubated him, did the scope and took a sample from inside the lung. He's now heavily sedated/unconscious with the ventilator breathing for him. Once they test the samples they will try to formulate an agressive treatment to get function back in the collapsed lung. Now, it's a waiting game. All hope is not lost yet, but we're running out of options.

Rob

kim,l
03-20-2012, 03:18 PM
dear rob i am so sorry it has come to this . my father was intubated i know how terrifying it is my luv and hopes are with you at this terrible time just being there for him and making every minute count is the best you can do just let him know you love him and talk to him he can hear you and know you are there my father did hugs kim

debbie-b
03-21-2012, 03:28 AM
That's right Rob, ALL HOPE IS NOT LOST. Don't ever loose hope.
I am sorry that your dad has to be on a respirator now, but it is possible to get off it again.
The candle stay's lit.

Debbie

magistramarla
03-21-2012, 10:48 AM
Rob,
I was so sorry to read this. It seems so unfair that just when things are getting better, something else hits. I agree with Debbie. All hope is not lost. Hang in there with him and encourage him to get through these rough days and get off of that ventilator.
I hope that the docs come up with a really aggressive treatment that helps him to recover quickly.
Take care of yourself too!
Hugs,
Marla

DrinkofWtr
03-23-2012, 10:07 AM
My hopes and prayers are for your Dad to recover from this set back.

Saysusie
03-23-2012, 02:32 PM
Rob;
I agree, never give up hope. Please know that the hope that you hold for your Dad's improvement is strengthened by the hopes and prayers that everyone here sends out to you.
I, also, hope that the doctors are able to formulate a very aggressive plan of treatment for you Dad that will bring him back from this set back.
Please know that you are not alone, we are there in your heart every step of the way.

Peace and Blessings
Namaste
Saysusie

leaann
03-23-2012, 06:22 PM
4654
My friend Lilly passed away a couple of weeks ago and this is the candle pic that I had posted on facebook for her, even though I lite a real candle. I have one that has a huge butterfly on it and it is green and would be more than happy to light it for anyone who needs a thought or prayer.
thanks this is a great idea.

rob
03-25-2012, 03:01 PM
I thought I knew the meaning of the word "hard", the meaning of the word "difficult".

I had no idea. Any little bit of progress is like gold, so you try to rationalize and say
that this is a good day.

And you do it, but you know the counter clicks back to zero at midnight, and you
enter another day.

Between yesterday and today, everything can change.

Rob

Nonna
03-25-2012, 03:31 PM
Hugs, the love of your cyber family
Good thoughts and prayers are with you to give you strength to go on

kim,l
03-25-2012, 03:56 PM
may today be a better day for your dad and for you luv kim

rob
03-28-2012, 02:38 PM
Hello everyone,

I have been searching for the right words for days now. I don't know how to say this. I've started writing, but have had to stop countless times now. But I have to say it.

Dad has been deteriorating more and more each day. The Dr.'s have tried everything, but the damage to his lungs is massive, irreversible, and now terminal. He's slipping away rapidly, and in a few days, my father will die.

I can't believe it, I don't want to believe it. I have never experienced such a horrible feeling of sadness and emptiness. Mom and Dad have been married for 58 years. She is devastated. We are all devastated.

He's my father, my best friend, and my hero.

I don't know how to say goodbye.

Rob

running girl
03-28-2012, 03:59 PM
Dear Rob,

I too am struggling to find the right things to say. I've never met you, but I've learned a lot about you. I know you are a compassionate, caring man who selflessly gives of his time to people in need. I've learned that you love deeply and understand how important family is. I know that you try to remain positive even when life seems very unfair. I believe your father has helped make you this man, and that he is fiercely proud of you.

You are so blessed to have such a close relationship and to have shared so much with him. This, of course, makes this so difficult.

I lost my mom a few years back. She too was my best friend and my hero. What a great lady! I miss he every day, but I am filled with joy when i think of the great times we had and the life lessons she taught me.

We will all be thinking of you, Rob.

Brenda

tgal
03-28-2012, 04:10 PM
I know this post was difficult for you to write but lama glad you did. everyone here cares about you and will want to be here for you. This is a terrible time and my heart aches for you but I am comforted in the knowledge that your mom, sisters and Karen are there for you

I will be here whenever you need me and my thoughts are with you always

DrinkofWtr
03-28-2012, 04:25 PM
Rob, We are here for you. If you need someone to talk to, please feel free to E-Mail me. I have been through a similiar experience with my Dad.

steve.b
03-28-2012, 09:05 PM
rob,
it is never easy.......
but please take time to remember some of the good times.
please find a good memory
find a quote worth holding on to

your dad was and still is a good man
remeber some of his good times.... he deserves these memories

kim,l
03-29-2012, 02:06 AM
rob i am so sorry i am here if you need someone to talk to losing your father is a terible thing to deal with i have been there. please give my best wishes to all your family at this horrible time and hold to your memories and every minute you have with him. luv kim

debbie-b
03-29-2012, 10:15 AM
Rob,

I am so sorry. All of us here were so hopeful, along with you, that things will turn around.
Like everybody else said, we are here for you.
I am lighting a candle for you too.

Debbie

rob
03-29-2012, 10:45 AM
When I'm not at the hospital, I try to do normal everyday things to occupy my mind.

If I don't, the waiting and the emotional pain becomes unbearable.

I keep on asking why, even though I know there's no answer.

magistramarla
03-29-2012, 10:54 AM
Rob,
I've been thinking about you every day, even though I've had no computer access.
Like others, I really have no words to offer you, but please know that I'm thinking of you.
We'll all be here for you when you need us.
Love & Hugs,
Marla

Saysusie
03-30-2012, 11:23 AM
Thinking of you today (and everyday) Rob..you are in my heart as always.

Peace and Blessings
Namaste
Saysusie