My husband is in the hospital

[judylyne]

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]

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]

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

[jimercat]

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]

Dear Judylyne
I will be praying for you and your husband. May God grant you peace in the midst of the storm.

[cukita99]

i will b praying for u n ur husband. god bless u both

[thenson3rd]

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]

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]

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

[jimercat]

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

[Paty]

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]

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]

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]

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]

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

[MtPockets]

JackieMax, I'm so sorry to hear how your husband is doing. I will remember both of you in my prayers.

[CindyM]

Hello Jackie- good to see a post from you! Sorry to hear about Horace, though. Give him our love! Cindy

[judylyne]

i'm sorry to hear your husband is doing poorly. The day I brought my husband home from the hospital I got a call at 3am that my daughter in NC was in intensive care with a ruptured appendix and she was on a vent and unconcious. She has finally regained conciousness but it was close. I told her to go to the the doctor for 3 days but she said she didn't have any insurance so noboby would see her. So what do you do? Judy

[MtPockets]

Judy, I'm sorry you are going through so much. I know what your daughter is going through. Been there done that.
I went to the emergency room years ago with a terrible pain in my side.The ER Doctor asked me what was wrong? I said I guess my appendix is ready to come out. He got angry and said look I'm the Doctor here, I'll tell you what is wrong, not you telling me. He said I had gas and sent me home. After driving over 45 minutes to my home, my appendix ruptured and back to the ER we went. They had to open me up, remove all the intestines, and clean me out. I wound up with Septicemia or (blood poisoning), something like that. It took me a long time to recover, but I did get over it. I hope your daughter gets well soon.
Just another example of the Doctors getting upset when you mess with their God complex.

[Icanmanz]

Hi Judy! Just read your post, and it tore at me! I will keep your dear husband in my prayers. Sorry I am late in replying, but I had computer issues for a few days. May God bless each of you!

Irma

[Icanmanz]

Jackiemax, you and your dear husband are in my prayers! Als is such an evil disease! I detest it! God bless, dear!

Irma

[judylyne]

I feel like everything is falling to pieces. My husband is deteriorating. Last night he woke me up and ask me to hold him because he was scared. So i put my arms around him and he went back to sleep. My daughter who was in the hospital with a ruptured appendix finally went home but they sent her home with a prescription that cost several hundred dollars and she didn't have the money so now she has gangrene. I asked her why she didn't tell me I would have sent it to her. They should have known that if she didn't have insurance they should have just gave her the antibiotics to take home with her. Judy

[Al]

Hi Judylyne. Some days life just sucks. You can say what you want about faith but stories like yours just make me sick and ask why? I don't have any answers or good advice for you. All I can say is there are people here for you and we feel your pain.
AL.

[CindyM]

Hello Judylynne - it is really unfair that life is throwing you curve balls at every turn.:sad: I honestly don't know how a hospital can be so far off their game to cause so much harm! I certainly hope she finds some resolution beforfe she gets any more ill!

Your story about your DH warmed my heart. We all want someone to hold us and hug us when times ar dark. He is lucky to have you in his life! Peace, Cindy

[jimercat]

judylyne,

You and your family are in my thoughts and prayers.

I hope for your daughter a speedy recovery and hope the medical "practitioners" get their act together.

Please hang in there a give a hug to your husband from all of us.

JACKIEMAX,

I pray you find courage and comfort and that Horace can find peace. You are a strong lady!

[paula-jane]

Judylyne,

I'm so sorry to hear of your struggles, but, you seem like a very sound and strong woman. Who knows why some of us have to fight harder for everything in this life and others don't. I know that no matter how bad I think things are in my life, I know that somewhere out there, many other have it much worse than myself. I hope that things turn around for you... and whatever happens, that you know you have done all you can do. It must be wonderful to have your husband cuddled up in your arms... knowing that you are bringing him comfort and peace. Love is wonderful.

[fiddleplayer51]

Judylyne,
You must feel very torn knowing that your daughter is so sick and yet not being able to take leave from home to be with her. Your burden is so very heavy just now. You must have extraordinary strength and I know that your husband must feel so much comfort from your presence. Know that there are many people who are aware of your struggles as they go through their own. We are alone and yet we are together thanks to this forum. Thanks to this forum we can be aware of each other's struggles.
As I write this, I am hearing my husband, who is newly diagnosed with bulbar ALS (though we haven't yet gotten our second opinion from the ALS center in Charlottesville), going through his shop throwing things to dispose of into a bucket. He's getting ready for when he can't do these things. His speech is getting worse and yesterday I noticed he is beginning to drag is right foot when he walks. He says he feels weaker.
I read your posts and the posts of others and can't imagine seeing my husband lying there helpless. It's beyond comprehension. I actually hope his progression will be rapid with death sooner than later so that he doesn't have to know prolonged total helplessness. That may sound harsh, but he would suffer so greatly if he had to lie there day after day not being able to provide for his family.
I am grateful for this time together since diagnosis so that we can plan final things/arrangements together before communication is impossible.
Blessings to you and to all who are witnessing the decline of their spouses or whose spouses are completely dependent. Also, I hope your daughter is getting better.
Jane

[andyvaughn]

Judylyne (and to Jane)
I am sorry to hear about your husband and daughter, I hope your daughter will promptly get the help she needs. Maybe the hospital social worker can help her apply for some state insurance? Gosh, what a cross for you to bear. You are in my prayers.
Jane.. my husband also has bulbar onset, and it has spread to his limbs, affecting his left arm and left leg now. He too is dragging his left leg. Your post brought tears to my eyes.. my husband was just diagnosed in February, the 20th to be exact. The first couple of weeks I kept praying that we would get in a car crash and go together.. and I felt feelings similar to yours, praying that either this thing would move very fast, or move very slow. And, in our case, it seems to be moving very fast. I will say that those feelings, at least for me, have finally passed. As I have involved myself more and more, I realize that life can continue to have meaning and joy for those with ALS, and us as their family members, it is just going to be different now. There are people on this forum who are very physically limited, but convey a joy and a purpose to their lives. I think each new limitation, each new limb involved, brings a new set of grief and dealing, then you move on. I don't want my husband to suffer, and will honor the choices he makes about his health and how far he wants to go, but my own personal hope is that he accepts what medicine has to offer, if needed, such as a peg, bipap, etc. However, if he doesn't, I will honor those wishes. He isn't clear on what he wants to do with that yet. I know how devastating this is. Watching my once healthy, vivacious husband being robbed of his own body is heartbreaking beyond words. I still cry every day, but I also am finding peace more and more every day. I find that staying in the moment, being so very grateful for what we have today, that today he can hold me, he can still talk, that he is here... well, I just thank God for it today. I don't know anymore what the future holds, I used to think I did...had a nice little plan for it.
Anyway... I know exactly what you are feeling. I hope and pray for the best for you and your family, mostly I pray you experience peace and love. Who could possibly wish for more?
Andrea - wife of Pals Jim.

[fiddleplayer51]

Andrea,
Thank you for your words of wisdom. Actually, I can imagine that if a person with ALS must endure a more gradual decline, he/she may reach spiritual etc. heights as the progression spreads to more parts of the body. In an odd sort of way, ALS could be a gift of sorts-a door opening to another level of understanding and being which might otherwise be unattainable. I know that as a nurse on the oncology floor at our local hospital I witnessed so many people with terminal cancer who demonstrated unbelievable peace and acceptance of their decline and impending death. They gave so much to those caring for them simply by their quiet peace. What an inspiration that was!
Thanks again for your kind words. I know you are right-that every day is precious. Many blessings to you and your husband. I pray for you also.
Jane

[andyvaughn]

Thank you Jane. How ironic how much we have in common, I am a nurse also, though I now do case management (handly little skill these days) and my background is HIV research/care. In the early days HIV was a death sentence, and many patients taught me, by their actions, about living with grace and dying with dignity. I read somewhere recently a person was talking about the passing of their loved one, he said " he taught me how to hang on tight, and how to let go"... still makes me cry to hear it...
It amazes me to think Jim was only diagnosed 2/20/08. It feels like forever ago. Only 4 months ago I was a very different person, very tied into our "stuff", the business and distraction of day to day living. Today I feel like a whole new woman is typing to you. I wouldn't wish this on anyone, especially my husband, but trying to see the good today
Andrea wife of pals Jim

[Lorie]

I have been at the hospital with my Brother Tim with Pneumonia. Two times between December and March. Very scarry! He is doing better now.

Jackie. I have a friend who has had ALS for 25 years. He is on the vent for the last five. He only had one infection recently and was able to be treated at home with antibiotics. The vent has to be monitered continuously. He has done very well. I think it will have a lot to do with the Caregiver. It has worked well for him. So I thought I would tell you that. The decision is between you and and your husband. I don't the the Doc. had the right to tell you that. It is not his decision.


Both your families and every one on this Forum is in my thoughts and prayers as we battle this horrible thing together!

Lorie:(

[samrockwell]

God Will Have Mersy On You

[samrockwell]

Hi Friend My Name Is Sam Rockwell

[judylyne]

Thanks for all your prayers for my family. I have to go to NC to be with my daughter. Shes not getting better. I'm also a nurse and I worked for a lawyer so I think I might have a little influence. I just hope my husband stays stable while I'm gone. Judy

[fiddleplayer51]

Have safe travels JudyLyne and may your daughter begin to heal. I know she will benefit from having you with her. I'll be praying for you and your daughter, and I will pray that your husband remains stable in your absence.
All the best, fellow nurse,
Jane

[fiddleplayer51]

Hello Andrea,
We certainly do have alot in common! You are very inspiring and I appreciate your perspective. I too feel like a different woman since my husband's diagnosis on March 28th. I spent last week throwing out many things in an effort to simplify our life and eliminate clutter. It's amazing how things we thought we needed to keep are no longer important. There are many lessons to learn through this experience.
Many blessings to you and your husband and to all who are struggling along in their daily lives with this illness. Thank each and every one of you.
Jane

[jimercat]

Welcome to the forum. It looks by your profile that you are in process of finding our what is wrong with your body.

You will find lots of info here. Whis you well.

[JACKIEMAX]

i appreciate all of your posts on my and horace's behalf. we are all one big family
here and i don't get to get on here often and post. horace does not want the vent
as his lungs are so diminished a vent would not help. the bipap keeps him alive com-
pletely, and when his lung muscles cannot handle the pressure of the bipap any
longer, his heart will fail. his primary care dr. says pneumonia is usually the cause of
death in respiratory related als as mucas, etc. get into the lungs and can't be coughed back up.

hospice tells me it could be weeks, days, or hours. no way of knowing. it is spring
here in middle tennessee, and we live in our dream house we built here in 2004. all
of his baby trees are growing and blooming, his tulips, cherry trees, and dogwoods are
blooming, our grass is a luscious green, 2 acres worth, and the birds are singing.

so, what's wrong with this picture? he's confined to the den and can't go outside and see and enjoy all that work he did. he is an 'outdoors' person.

jackiemax

[CindyM]

Oh I am sorry, Jackie. My heart goes out to Horace, being an outdoors gal myself!

[Icanmanz]

jackimax, bless you, and your husband. That is exactly what they told me about my son, Hospice that is. They told me it could be days, weeks, or hours. It was Saturday, 7:00 PM when they told me that. Come Sunday, the following day, at 5:50 PM he was gone. With Als, you'll never know! It is so tricky. May God bless you, he is leaving you with so many memories, his beautiful plants, but you know something, Jackie? You will feel so close to him, when you will take a walk out to the garden, and watch them plants grow so beautifully! This is something I am experiencing myself.
Keep us posted dear, I pray to God He mantains your husband comfortably. May God bless each one of you.

Irma

[MtPockets]

I'm sorry to hear how so many of us are progressing.

I just got a wild ride to the hospital in an ambulance this past week for a couple of days stay. Seems I picked up some kind of flu bug and started vomiting so strong that I could not catch my breath. That is a terrible feeling to know you cannot breath because all your muscles are in spasms with dry heaves. Now I know how many of you must feel every day. :(

The only way I could catch a breath was to do the Heimlich maneuver on myself, and the chest thump. That would shock the muscles to stop long enough so I could catch a short breath before the next round started. Good thing I had my fireman background training in that area. My oxygen levels in my blood were below 70% by the time the paramedics got here.

Needless to say my wife was upset, my grandson was shocked. Kind of a preview of coming events. I would much rather die in my sleep.

[JACKIEMAX]

thanks for posting about your son, and please accept my condolences. may i please ask you what his situation/health was when hospice told you what hospice told me? was he
on a bipap 24/7 like horace is? was he in a coma? was he sleeping a lot at the time, and did he also talk to you some? if you prefer not to post this info, would you please send me a private message? thank you. i really need to know his situation when he was taken home. jackiemax