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judylyne

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Joined
Nov 18, 2007
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66
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Loved one DX
Diagnosis
10/2007
Country
US
State
michigan
City
rothbury
I've been in florida for 3 months to get out of the winter but we had to come home because my husband went from 175 lbs. to 125 lbs because he has lost his ability to swallow. He is going to get a peg tube tomorrow. The Dr. tried to talk me into just putting him on hospice and no tube feeding but I can't let him go because he still has a quality of life. He doesn't understand what is happening. He tells me everyday that he loves me. Until he is suffering I will just take care of him without hospice. I just need someone to realize that just because someone is confused you don't give up them. I already signed a do not resusitate form and No vent but he has pneumonia so I don't know if he will even tolerate the surgery. Pray for him. Thank you Judy
 

hopingforcure

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Joined
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So so sorry, you have all of our love and prayers. This is so disturbing to hear, we can only hope that things will improve, and he will be able to get some relief. You will be in my thoughts, let your love carry you. Keep us posted...
 

hopingforthebest

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Feb 20, 2007
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02/2007
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NJ
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Mays Landing
prayers for you!

Dear Judylyne

Will pray for you both right now! Keep in touch. Take care of yourself also!

May God give you strength and peace.


Patty
 

brooksea

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Country
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judylyne,

You are very brave. I wish you strength and courage while going through this current struggle. I hope your husband will come thru surgery without difficulty. Please let us know.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
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State
Ms
City
Gulfport
Dear Judylyne
I will be praying for you and your husband. May God grant you peace in the midst of the storm.
 

cukita99

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Jun 12, 2007
Messages
361
Reason
PALS
Country
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State
tx
City
el paso
i will b praying for u n ur husband. god bless u both
 

thenson3rd

New member
Joined
Mar 20, 2008
Messages
4
Reason
CALS
Diagnosis
07/2002
Country
US
State
pa
City
pittsburgh
Feeding tube

I have been taking care of my aunt (als) for 6 years now. In june her husband passed and the rest of her family has abandoned her So, I am now taking care of her 24/7. Despite everything that has happened she still wants to go on and she is aware of everything going on around her. She has had a feeding tube (gi) for three years now. At first there was some discomfort. The only real problems I have with it is the balloon will pop now and then. but, other than that it does not bother her. She is also on a Vent., I do not recomend. Vents are painfull We have had on for a year and they are changed every month They aslo severy limit what you can do and its a long process inorder to get in in home aproval and be trained on one. I do not use hospice they take over every thing medications addaptive equipment If they don't say you can have it then you can't. Hospice is more for people who ready to pass on the ones who have had enough.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
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Learn about ALS
Country
US
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New England
City
Anytown
Hi Judylyne - I hope your DH is feeling a little better by now. Hopefully his pneumonia is better and they were able to insert the peg. And hopefully it will not take him too long to adjust to it.
 

judylyne

Active member
Joined
Nov 18, 2007
Messages
66
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
michigan
City
rothbury
My husband had his feeding started this morning. He went without food for 4 days and I just felt they were trying to get me to agree to stop all treatment. I am exhausted I have been at the hospital for 4 days because he can't turn himself and the nurse aides don't do it. I think the reason his lungs are so full now is because he didn't get any nourishment for so long. But he still smiles and says he wants to come home. I suctioned him every 15 minutes all night and he sounds better this morning. Thanks for letting me vent my frustrations. And thanks for your encouragement. I'm going to get some sleep now because my daughters are at the hospital taking care of their dad. Judy
 

brooksea

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Good luck judylyne. hope you get the rest you need and hope your husband continues to get better.
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Hi Judylyne

Hi Judylyne:

I know how you're feeling, I took care of my husband at home for two yrs. and six months I lived at the hospital, I fed him through his PEG, I suctioned him I gave him medicine through his PEG, etc. etc.I don't regret at all doing all this for him I, he was also on a vent that is something he regreted, but had to be done since we were at home and he started having problems to breathe and got very scared, he couldn't speak and we communicated with an alphabet, and with his eyes I knew what he wanted, once at the hospital he told me to disconnect him, this cannot be done in Mexico, it would be considered assasination.

We got to the hospital June 30th, had the traqueostomy and the Peg, and on Dec. 30th, 07, started having problems air came in but wasn't coming out, a few month's before he went through a Pneumonia.

He died four day's after our second grand-child was born, it looked as though he was only waiting to meet the little baby and finally God gave him the peace he needed; this is
such a horrible disease.

God bless you.

Paty
Baja California, Mexico
Cals to late husband Jorge
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Judy and Paty your husbands are so fortunate to have you by their sides to the end. Your faithfulness to endure so much "giving" is amazing. There are so many ALS patients who do not have the blessing of someone like you in their lives.
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Thank you Capt. Al

Thank you for your opinion Capt. AL, all I did for my husband was out of love,
Capt. by the way I made something for you and your wife, but I don't have an e.mail address to sent it to you, please send me a private message with your e.mail so that I can e.mail it to you.

Hugs,

Paty
Baja California, Mexico
Cals to late husband Jorge
 

wendy

Member
Joined
Nov 13, 2007
Messages
26
Reason
CALS
Country
CA
State
Ontario
City
Pembroke
Judy,

My thought and prayers go out you and your husband may God bless you and give you the strenght you need. He is lucky to have such a wonderful wife because we all know that sometime it is difficult and emtional to watch the ones we love suffer when all we want to do is make everything better.

God bless you!
Wendy
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
vsent/pegs and bi-paps

hello all,

i have not been online in a while now. my husband, horace, has had als for over 2 years now and has a feeding tube, but doesn't use it yet, he can still eat and swallow, but is on a bi-pap 24/7 vs. a trach and vent. his doctors all do not recommend the vent. his one dr. said people were not meant to breathe through a hole in their throats - can get infected, etc., and vents are horrible in a lot of cases. the bipap def. keeps horace alive, but his oxygen supply has diminished completely, and he's under hospice care. he can sit in a chair, lift chair, and watch tv, but his hosp. bed, and portable potty chair are so close he only has to be pulled up and turned around as he can no longer walk. the hospice nurses say his oxy. level could plummet rapidly at any time now.

keep us in your thoughts as i do all of you.

jackiemax
 
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