My Dad Has Guillain-Barré And He Is Ready After 11 Weeks To Go

[Binka]

He has been paralyzed and in a bed for the entire time. This is a man who rode his bicycle 100 miles a week. He has never been sick in his life. He turned 79 in the hospital on May 28. This thing came out of the blue and just floored all of us that know and love him.

My oldest sister is back there now. Jesus how do I let him go? He is in FL and I am in CA. She wants him to hang on until my other sister and I get back there, he wants to go NOW. GAWD. Anyone else deal with this?

[elleng]

1. DEAR Binka.

:hug:

[Tangerine LaBamba]

2. I have arrived AFTER a loved one died -

it was her time, and she went.

When I think of my last conversation with her, a few hours before she died, I get weak, wishing I could have done it differently.

But I couldn't.

You do the best you can, and trust your wonderful father to do what he has to do for himself.

At this point, he has to take care of himself, and if he chooses to go NOW, that's because he's sure of your love, and just wants his suffering to end.

I am so sorry. I wish peace for everyone...................

[Binka]

9. I am quite distressed right now

I know what he wants.....I just don't want him to go.

[Tangerine LaBamba]

15. I know, honey -

I really do know.

We don't want them to go.

But it's his call and he's suffering.

You have to love him enough to let him go.

This is the hardest thing you'll ever have to do.

I am so sorry this is happening to all of you.

I'll hold you in a good thought, all of you.

Be strong for your father. Be strong for him and trust him to do what is best for him...................................

[Wickerman]

3. I got nothing for you, but I'm sorry

:hug:

I hope you and your family find peace and your father comfort.

[proud2BlibKansan]

4. . .

:hug:

[ayeshahaqqiqa]

5. I"m so sorry this is happening to you

I've dealt with the deaths of relatives far away, and what I did was go into meditation and prayer, asking for help for those who are suffering. We Sufis have special prayers for this time. I also made sure to stay in close contact with my brother and his family. This helped a lot.

[Horse with no Name]

6. Dear Binka

I am so sorry.:hug:

I know this must be frustrating for your father, and ultimately it is his choice. I wouldn't deny anyone that.

Perhaps you could persuade him to hang on a little longer. 11 weeks isn't long enough to determine debility and with his prior physical state it could benefit him in the long run. 79 is young these days.

I'll be sending good thoughts to you and your family throughout this difficult time.
Mortality/Morbidity

Most patients (up to 85%) with GBS achieve a full and functional recovery within 6-12 months. Recovery is maximal by 18 months past onset.10

* Patients may have persistent weakness, areflexia, imbalance, or sensory loss. Approximately 7-15% of patients have permanent neurologic sequelae including bilateral footdrop, intrinsic hand muscle wasting, sensory ataxia, and dysesthesia.
* The mortality rate varies but may be less than 5% in tertiary care centers with a team of medical professionals who are familiar with GBS management. Causes of death include adult respiratory distress syndrome, sepsis, pneumonia, pulmonary emboli, and cardiac arrest.
* Despite intensive care, 3-8% of patients die.
* GBS can rarely be a recurrent disorder.11
http://emedicine.medscape.com/article/792008-overview

[crim son]

19. Very good post, HwnN. Binka:

I can imagine that eleven weeks being seriously ill feels like a lifetime, especially to a man who has been so active and healthy, but it isn't. So sorry, Binka. :hug: I can't imagine what you and your family are going through.

[Gormy Cuss]

38. Older age is one of the factors in mortality in Guillain-Barre.

I learned that when an in-law became incapacitated with it and died.

Younger patients can and do recovery fully.


eta: for Binka, I'm sorry. I know how it feels to be across the country as a parent is dying. :hug:

[abbeyco]

7. Oh Binka

I'm sorry to hear this. I don't have much experience but drop everything & jump your butt on a plane as fast as you can. I hope you'll see him before he passes - I had a family member not make it in time for her Mom's passing and it's bothered her ever since.

My best wishes and thoughts to you. :hug:

[H2O Man]

8. I'm sorry to read this.

Trust your instincts; you will do what is best for you. Likewise, trust your father's instincts.

[Binka]

41. Thanks My Friend

I don't post much these days but you know how special you are to me and my family.

[H2O Man]

42. Likewise.

And while I don't have the opportunity to post here as frequently as I used to, I frequently take a few minutes to read things here. So, should you ever wish, I am always available to talk, or listen.

Thursday would be my father's birthday. And that, of course,combined with this OP/thread, has me thinking about him, and the events from when he died. He went on his own terms. Stubborn group, his generation. I'm sure that you know that, first-hand.

Be strong. But don't confuse sadness and pain with weakness.

[KDFW]

10. Do you need some help getting there? I have friends at this place

who can help out
http://www.angelflight.com/

[Binka]

13. Thank you money is not a problem

your offer is most kind.

[KDFW]

32. I wasn't sure from your post. I'm sure you will do the best thing.

I don't know you but please accept my very best wishes.

[bkkyosemite]

11. If he cannot hang on then it is okay because he will always be with you. Do not feel guilty if you

are not there in time he will totally understand. When it's time he will go but not be gone.

[grantcart]

12. It is very sad

Seven years ago my 87 year old mother lost the ability to swallow. Initially she declined the feeding tube and was ready to go.
After two days she changed her mind and recieved a tube and eventually physical therapy so she can swallow. She was very frail at the time and had lost her sight and was confined to a bed.

She is rarly coherent now but in the few moments a day that she has some lucidity she simply asks "How much longer can this last".


My father died instantly in a drowning exercise 30 years ago and while his life was too short his passing had much more dignity than the terrible suffering my mother has had to endure.


I feel for you. Its not for you to let or not to let him go. Its for him to let go and for you to support him. He is taking a difficult trip and needs your help.

[Horse with no Name]

14. What a wonderful, insightful post.

Thank you.

[Tangerine LaBamba]

17. Oh, your poor mother -

she went against her initial instincts.

I've spent a lot of time in nursing homes - now called "rehab centers" in so many places - and I've seen people in your Mom's situation.

It's terrible. I am so sorry for all of you.

You clearly have learned from it and now can share what you have learned.

Thank you for this remarkable and loving message.

I wish you and your mother the best......................................

[Binka]

21. Thanks Grant

He is done and wants to be with my mom his beloved wife of 35 years. He has been the rock of our family forever. To see him go is devastating.

[nadinbrzezinski]

16. Dear Binka. hugs

this is the hardest thing for family members. From the point of a health care provider, who used to do it, there are times that it is best to let them go... so they can go in peace. Perhaps you can say your goodbyes over the phone, Perhaps get on a plane.

HUGS... but this is not just for him, but also for you. You need to find your peace as well.

[Warpy]

18. Has he had any improvement at all in movement?

GB is generally survivable and most people have a return of function. However, recovery can be intensely painful as paralyzed muscles begin to awaken. If he's in pain, fight to get him better pain control. It can be crucial at this stage.

This is all stuff you'll have to address when you get there. Try to pin his docs down as to the comfort measures he's getting.

Letting go when it's time is the toughest thing you'll ever have to do. Just be aware that this might not be the time.

A good overview is at http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413

[TahitiNut]

20. ...

:hug: :loveya: :hug:

[Binka]

24. Ah Nut I Am Bawling My Eyes Out Here

Wish you were here.

[TahitiNut]

30. Me too, luv. Me too.

I've not revealed this on DU yet, but my mother is now (for ten days) in the hospital, gravely ill from COPD and pneumonia, and we're looking at short odds she'll survive to see her 90th birthday in September. She's VERY weak and going downhill. I'm just not dealing well with it. Not sleeping and showing all the signs of depression again.

So ... believe me ... I understand. :hug: :loveya:

[Horse with no Name]

35. .....

:hug:

[Binka]

40. Sorry about your Mom Mike

It is 4:47 am here and I can't sleep. You and I have talked many times about my Dad, he has had a remarkable life, I just can't believe how quickly this happened.

I have been teaching Peyton to mountain bike in Annadel these past few weeks, it is a very special place for me. My father, Benjamin, and I rode up in the same park after my mom passed in 1995. I was so looking forward to riding with my Dad and Pey some day.

I have run and biked 1000's of miles in that park and I have cried a million tears there as well. I guess I will be heading there this morning after Peyton goes to camp, a few more tears will be shed no doubt.

[SeattleGirl]

22. I have, Binka

My mom was ill for a very long time. Some days, she was feeling really good, and the next, she'd be in the hospital. She finally decided she wanted her feeding tube taken out; we all knew that meant she would die. She didn't want to leave us, but she just couldn't go on. We had all told her already that when she felt it was time for her to go, it was okay. I was not there when she passed away, but she knew, as did I, that it was all right.

I grew up listening to my mom, who worked in a hospital, tell stories about her patients. The saddest ones she told were of people who were ready to go, but kept hanging on because someone in the family didn't want them to die. She made us promise that we would never do that to her.

It was hard, losing her, and while I miss her to this day, I am so grateful that she was my mom.

If I were in your situation (and I know I'm not), and if you feel you can do it, try to get word to him that it's okay for him to go, if he feels that it's time. I believe that letting someone go when they are ready is one of the most loving things we can do for those we care about.

Whatever you decide, Binka, I wish you peace.

:hug:

[Odin2005]

23. OMG, I'm so sorry!

:cry: :hug:

[spanone]

25. hugs & love

:grouphug: :hug: :cry:

[EFerrari]

26. I'm sorry, Binka. Whatever you decide to do.

:hug:

[AwakeAtLast]

27. So, so sorry to hear this

:hug: :hug: :hug:

[Kceres]

28. So, so sorry. Bless him and you.

Guillain-Barre is a opportunistic monster. It took my 26-year-old brother-in-law in 1992. He was healthy as a horse and rarely sick. He had a short diarrheal illness and then GB set in. He lasted for six weeks in the ICU before he died. I'm sure the medical team is keeping your father comfortable. I wish you and family strength.

[merh]

29. She was only 56 and it was a brain tumor that robbed my mom

of her independence and her dignity, and then the cancer was in her bones and her back and there wasn't anything much they could do but give her meds to manage the pain and she hated the meds. She tried to hang on, but after 10 months, she just wanted to go.

My brother lived in CA and 8 months into it I knew there would be no miracle. I could see the decline and I called my brother to tell him if he wanted to see mom before she died he needed to come home. I told him that if he wanted her to know he was there he should come home immediately. He got angry at me, accused me of killing her with my negative attitude. He said that surviving cancer was all about being positive and my defeatist attitude was causing mom to give up. He didn't want to let her go either and he blamed me. He did fly home and even then, he couldn't accept the fact that the disease was killing her. While he was home we had to rush her to the ER because she was dehydrated and she had to be admitted. Again, he was angry with me and blaming me for killing her by being so negative. We got into it. I told him that if he wanted mom to stay alive in the state she was in, in the pain and as a person she never wanted to be, someone reliant on others - then he was the most selfish person I knew, he wanted her to stay only for himself and not for her. If he loved her, if he wanted what she wanted and what was best for her he would let her go.

So yes, I have been there and it wasn't easy and it is never easy. I was only 21 and over the last 28 years I have missed her every day of my life, but letting her go was what was best for her. That shell of a body had her soul trapped and she deserved better than that. She deserved to be out of pain and in peace.

You are in my prayers as is your dad and your siblings. It is never easy but it is a part of life and his spirit deserves to be free and at peace.

:hug:

[SeattleGirl]

31. Oh, merh.

That is so sad.

Here's to the moms who are gone but yet always with us. :toast:

:hug:

[vincna]

33. You need to get there as quickly as you can

I lost my brother twelve years ago and while I still miss him terribly, it is a great comfort to me that I was with him when he passed away. I helped him as much as I could when he was sick and there is nothing I wish I had done differently.

You all need to reassure him that you support him and that you will all be OK without him. If there are any divisions in your family, old wounds that never healed, now is the time to fix them and your father needs to know that you've done so. If you are religious, pray for him; I am and I will. Regardless of what happens, you will all need to be at peace with each other and at peace with yourselves, so do whatever you can as soon as you can.

You have my deep sympathies.

[handmade34]

34. it is so very difficult

it is never easy but we must respect the people we love...

(2 years ago)my daughter was able to get to her Father in Montana when she got the news; she called me from his bedside and he listened while I said goodbye(he passed soon after).
Last year when my step-father went for a routine visit, he ended up in the hospital with 2 days to live. No one else in the family could bear to see him go, I stayed and held his hand.
I laid next to my late husband and whispered goodbye after years of illness. Just make sure you say goodbye.

[burning rain]

36. No. Never even heard of it.

But my best thoughts are with you, your dad, and your family.

[madrchsod]

37. he`ll always be with you

and maybe he knows that....i did`t get to say go bye to my dad and my mom suffered a massive stroke. they are still with me.

[Stinky The Clown]

39. Look for things to celebrate

The grieving is normal and healthy. Let it follow the course it wishes to follow. But you need to chart your own course for the celebration of your Dad's life. 100 miles a week on a bike ain't bad at 79.

My mom died at age 84 after three open hearts and a bunch of other, smaller cardiac incidents. She waited for my brother to come from the other coast and then let go. She died on her birthday, which was also the first day of spring.

The night she died, we went out to a restaurant - the whole family who was there - and had a party that was tearful and joyful.

It hurts, to be sure. But celebrate, too.

:hug:

[Binka]

43. Thanks STC

The whole cycling thing began after he and I did the Rosarita-Ensanada 50 mile bike ride back n 1994. After my Mom passed in 1995 he went crazy on his bike. BC to Mexico, San Diego to Florida, Oregon to NY. The guy was a bike mad man.

He has had a wonderful life, from a dirt poor childhood in Albany NY, to becoming a decorated Naval Officer.

I just wanted Peyton to have more time with him. I had her at 42 and he is the only grandparent she has ever known.

When she saw me crying last night she told me, "Mom don't cry, he will be dancing in the clouds."

I am still crying.

[Stinky The Clown]

63. ...

:hug:

[malaise]

44. Give him the right to let go

It's hard but forget your pain and think about his.
:grouphug:

[Binka]

45. I Know And Can Not Believe How Long He Has Endured This

Peyton and I are throwing flowers in the air this morning.

[Karenina]

48. I'm so sorry, Binka...

:hug:

[Are_grits_groceries]

46. So sorry!

My Daddy had a stroke in 1984. He never regained consciousness. My Mama, my brother and I had to decide if we wanted to put him on a "no code" status. We all agreed that it was the right thing to do, but it was still very hard. I remember being positive that's what he would want, but after we made the decision, I had to lean against a wall because it hit me so hard. I thought "Merciful heavens! Is this how God feels everytime? I wouldna want the job."

The other issue was that none of the doctors were sure of anything. They hemmed and hawed, but they really didn't know how much hope for recovery there was. It wasn't good, but there were too many variables. Then one night I was sitting by his bed when one of his nurses came in. She slowly and lovingly uncurled his fingers from around a washcloth and massaged each one. Then she turned it back. Out of the blue she quietly said, "I do this for all my patients that have to make a journey soon." She never once looked at me. I thought that was the kindest way one could be told that somebody was going to die.

The night he died the tv was on in his room. As we were walking out after saying goodbye, I heard the theme from "Sanford and Son" playing softly in the background. That was his favorite show, and I knew he was there.

[Binka]

49. Holy Shit Grits

You have me bawling my eyes out again.

[Are_grits_groceries]

53. Didn't mean to do that.

I wish I could do something for you. :hug:

[TexasObserver]

47. I feel so bad for you! That's tragic.

My folks are about the same age. We've had a scare with each one the past year, and it forces us to comtemplate losing them.

Your dad's fate is the one that worries me most, for my parents and for myself. When your life has been active, it's hard to imagine being trapped in your body.

I hope you find comfort.

[Binka]

50. Hey TO Love You!!!!

Thanks for the shout out.

[TexasObserver]

51. Back at you! Hope the rest of your family is getting through it OK.

Don't you have children still at home? I ask, because mine are all grown, and I thought I recalled you mentioning children under 18. If so, how are they dealing with grandpa's situation?

[Binka]

55. I Have 3 Grown Children & An 8 Year Old

Only Peyton lives with me now, she is helping me get on with things. She is a little angel.

[TexasObserver]

59. Yeah. I recalled something along those lines.

I thought I recalled you had one in grade school, but I just couldn't be sure.

I know she must be a real comfort to you.

[W_HAMILTON]

52. Doesn't it eventually go away?

I haven't thoroughly read about the subject, but I thought it was an illness that has a quick onset, but eventually fades.

Does the doctor not believe that your father will recover from the illness? If so, why?

[Binka]

56. He is 79 and his case is VERY SEVERE

He wants out of his wrecked body.

[W_HAMILTON]

66. I'm not sure what to say.

What has his doctors advised? I agree with some other people, in that you should press the doctors to give him better medicine if he is having trouble with the pain. Unless the doctors think there is no way he will ever recover, I would urge your father to press on. I know it can be difficult, but I thought even severe cases resolve eventually, it's just a matter of waiting it out. But again, I would trust the doctor to know what the prognosis is, and when he thinks it will finally subside.

[NashVegas]

54. You Need To Get On a Plane, ASAP

It hurts, but it's supposed to hurt, and you're only going to have one shot to say "goodbye."

And I'm so sorry for your loss.

[Fumesucker]

57. I dealt with the death of both my parents many, many years ago...

All I can really say is..

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[mitchum]

58. Binka, my thoughts are with you and your family

you are a good daughter
safe passage to your father

[mamaleah]

60. Binka, you are in my thoughts.

I am so very sorry that you and your family are going through this.

I knew very little about GBS, but your post gave me reason to look it up. I too thought GBS eventually goes away but I guess there are very severe cases.

Your family and you will be in my prayers and thoughts. Again I am so sorry.....

:hug::hug::hug:

[CakeGrrl]

61. My sympathies.

Six years ago, we had to let my Mom, a dialysis patient, go after a blood infection put her in crisis and she spent several months in a state in which her system gradually shut down. Near the end, one of my sisters would swear that Mom asked to let her die. All of us children had agreed that if there was no medical hope of her system recovering, it would be the best thing.

You never want someone to leave, but it might make it a little less difficult knowing your Dad is very clear about being ready. Hopefully you'll get to see him once more.

Take care.

[joeybee12]

62. I'm very sorry to hear this...it's tough...just by chance i decided to

fly back to visit my mother who had been in really bad shape...i was going every other weekend, and had been the weekend before as well, but decided to go...she took a turn for the worse pretty much about 2 hours before i landed...fortunate, i guess...I don't know what i'd done had I just missed her...can you call your father and speak with him...is he able to recognize your voice? I don't know much about this illness, so i have to ask that...good luck.

[GreenPartyVoter]

64. *hugs* I know it's a devestating situation. I went through something somewhat similarly but

my MIL was in a coma, so the debate was between the rest of the family as to what to do.

I hope that whatever decision is made in your family, you can all find some peace in it somehow, some time. :hug:

[Ilsa]

65. Dear Binka, I am so sorry. I hope you can get everything

worked out so you can go. I hope your father is able to go peacefully.