husband says he's tired

[rowland's wife]

as a caregiver to my husband who was diagnosed in Sept. 2008 bulbar onset it is very hard. He is what yall call locked in he can move his left arm and leg a little bit but thats pretty much it, his speech is getting worse. He told me the other day he didn't know why god just didn't take him he is ready to die cause he can no longer do anything, it has been such a fast progress. He will go for days without eating, I think hes is trying to starve himself to death, he always drinks liquids.A coup[le of weeks ago he started running a fever he was coughing and his lungs sounded rattley? I called the dr but he refused to take any medicine he finally got over it after about 3 days. but every couple of days he will start coughing and sounding that way and run a low grade fever then it goes away I think maybe hes asperating on food and liquids. He refuses feeding tube. So far he doesn't use any thing for his breathing, he does have shortness of breath at times. It scares me I sometimes think the end is near about the only thing he hasn't lost yet is his breathing and as fast as the rest has gone I wonder if its next. when he does it its not alot because he has swallowing issues, he swallows liquids better than solids, but lately he even refuses to drink his ensure.

It is heart breaking to see the one you love so sad,ALS is a horrible thing, I tell him he just has to wait on god until hes ready for him. Its just hard to see him laying there suffering unable to move or do anything.

It sounds like there are several people on here with bulbar, but it seems like several can still move around some

 

[BarryG]

rowland's wife, I am very sorry about how your husband is doing and very sorry that he has progressed so fast. I was diagnosed with bulbar onset in January of 2008 and while I can't talk or eat I am still mobile, still driving, still walking and can still use my hands fairly well so I do consider myself to be very fortunate.

Why am I still doing well when Rowland isn't? I really don't know but I have a peg tube which has really helped me to eat and drink, I have been on Rilutek since Feb of 2008, I am relatively young and I really try to have a positive attitude and reduce stress as much as possible. It just shows how diverse we are in this journey because no one knows how much anything that we do affects how it will hit us.

I am very sad too, this disease is so cruel!

Barry

 

[indigosd]

I am soul sorry for your sweet husband and for you. Such a difficult journey. I would guess that he has aspiration pneumonia from the sounds of it. Is he taking any pain medications or antianxiety medications that will make this less painful for him? Have you asked for Hospice care so that YOU can get a break and rest? I am really just soul sorry. My husband has a PEG, speech is almost gone but is still able to do his ADL and walk. Wish we could do something for you other than listen. Just know that we are here for you. HUGS!

 

[Gelthling]

Rowlands Wife, I am going through a similar situation to you - mum was diagnosed Feb 09 with Bulbar and is in Palliative care at the moment as her swallowing has gotten so bad, and she can only move her arms and hands, but her writing is getting a lot worse, and may not be able to communicate for much longer as she refuses to use any other way. Mum has been refusing a lot of her meals, and even if she does eat, it is a few spoonfuls at most. She seems to get liquids down easier, we have been giving her some coke and Tea - her favorites and has not had a coughing incident with them yet, though the speechies say she should be on Thickened fluids..we just want her to enjoy what she takes in now.
I know what it feels to be heartbroken, I hate watching my mum go through this, I'm in tears each time I walk out of the hospital as I try to keep them from her.
Sending lots of hugs and understanding your way!

 

[cris]

I'm very sorry to hear about your husband, and how he seems to have given up on life. Maybe you could get him to look on here. There are so many on this sight who are fighting a very strong fight, that you can't help but be encouraged!

Will keep you and Rowland in our prayer!

 

[tdamess]

wishing you and hubby the best that it can be..it is a horriable diease no one can handle alone

 

[Jennifer McCormack]

I am sorry to hear about your husband and am in a similar, but different, situation. My husband was diagnosed in Jan 09 with bulbar onset....4 months after we were married. He has continued to steadily decline. This week has been hell. We are at the cusp of the next round of equipment and services....power wheelchair delivery, visit with an occupational therapist to help teach me proper transfer and use of hoyer lift, hospital bed delivery, peg feeding tube being "installed"..all being executed in the next week to two weeks. Opposite from yours, my husband doesn't want to die which means he has big bouts of frustration and agitation...particularly at night when he is most uncomfortable. I am hoping the next round of "stuff" helps at least keep him more comfortable..feeling a bit more independent..and able to conserve a bit more energy. He barely walks - only a tiny bit with a walker to get to the potty, which I have to help him with once he gets there - He tries to speak but it very very difficult to understand. He cannot get up on his own from bed or a seated position. I feed him mushed up foods and he drinks a lot of protein shakes. He can't do much with his hands...too stiff and weak. Pretty much every part of him has declined to very limited use.
This week feels like he has declined even more quickly just within days. I used to get frustrated when he was so agitated...feeling like he was taking it out on me...but this week I've come to understand that he's doing everything in his power just to survive. At this point, I am here to help him die with love. I try to focus on being as loving as possible but it's so hard. I find myself crying so much. I hate to see him this way. I hate to see my husband slowly taken away by this disease. I know he's still my husband inside but I miss him so much. He was the one I turned to when I needed support. I sure could use his sweet words and gentle reassurance now. I miss him.

 

[handinhand]

Oh Jennifer an d R Wife, I feel so sorry for all of you you're husbands and yourselves. This is heart wrenching to say the least. It is hard to speek for the one with ALS. What is great for one person is just wrong for another. Each of us will go down this road a little different or a lot different. I think we can encourage and hope that the patient will do everything to help them sty alive but remember for some of us it just isn't being alive to be in a bed with nothing to do but think of what we once were and what we had and what we are now missing. i just can't say for sure at this point where i will be when i can no longer take care of myself. Every single person is different and that is respected by me completely. Hugs to the both of you in this journey. God loves us no matter what we decide to do...

 

[brooksea]

Very sorry about ALL of it! Wish I could wave a magic wand and make it better.

It is so very frustrating for the pALS and the cALS!

 

[Blubear]

Jennifer and Rowlands Wife, and Rosella you are such strong loving women. Your PALS are so lucky to have you with all of your complete strength and love. It is such a horrible disease, in my eyes I think it is the worst out there. To watch our loved ones suffer kills us inside. It is so unfair. Things will go on their own divine course, but with your love an support they will all go knowing just how much they are loved, and that is the absolute greatest gift that you can provide. My thoughts and prayers are with you all!
Hugs,
Kari

 

[rowland's wife]

thank you all for your input and kind words. yes my husband takes morphine and other pain medication. We have a aide that helps us.
I also cry alot it is such a hard thing.
He drinks coke, coffeee and lemonade, isn't it funny how liquids go down easier.
He hasn't ate in 4 days now, but he has been drinking a little not as much as usual as he has been sleeping alot the last few days.
It is funny how one journey down the road of ALS can be so different than another, some people can't eat or talk but can still move and do things others can't move but can eat and talk, I guess they each have there own path.
I don't post alot but I read the post alot,this is a wonderful website

 

[KeeKer]

Jennifer and Rowland's wife, so sorry that you have to do this journey with your loved ones. All you can really do is love and support them in their decisions on how they want to handle the disease. Everyone has their own ideas of how they will deal with it. It is normal to greave the person who is no longer with you and who you know is dying. But crying all the time for this long is a little too long. Have you seen your dr. about anti depressants?
Colleen

 

[Blubear]

Hello again Rowlands Wife, I wanted to just check in with you and see how you are doing. Hang in there hun. Please keep us posted.
Hugs,
Kari