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I just wanted to get perspective from caregivers who have seen their patient suffering from ALS for very long time (several years). My dad is suffering for 2 years now and have been is close to total paralysis for last 6 months. Vent is only keeping his breathing going. I guess he has some control over his breathing muscles, because the vent is supposed to be in assist mode i.e. he "initiates" the breath. There is not much movement other then some head/neck movement and eye movement and facial muscles which he uses mostly to grimace (unfrtunately, there is little for him to smile). I see he has difficulty yawning, perhaps because the jaw muscles aren't what they used to be.
My question is, how much worse can it get ? Can eye movement / head movement cease ? Has anyone been in that situation who can share their experience ?
Thanks
grp
 

musicsmiles

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I'm Sorry

Hi, I am so sorry for your dad. My husband has ALS; he has the Bulbar onset and was diagnoised last year. From what I have read and hear, this horrible disease affected every person a little differently...
Live each and every day believing in God and hoping some day for a cure.

Sincerely
Belinda (Musicsmiles)
 

Icanmanz

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grp, read your post, and it brought tears to my eyes. I wish I could come up with some answers, but I can't. Like Belinda said, this monstrous disease affects Pals in so many different ways. My heart breaks for you and your sweet dad, may God bless him. My son departed 15 months after diagnosis, and he was just getting bedridden, breathing really bad, no speech at all, hardly no movement. He could not stand up on his own anymore. He had to be assisted. He had no volume. He was just there, so very close to being in a total vegetative state, whole my heart ached 24/7. Have you ever heard of crying on the inside? Well, I did that the whole time after diagnosed. I still cry, my heart will never be the same. I haven't felt joy in such a long time, in other words my heart is "dead." I just wanna see my baby again. How I wish that things were the way they used to be. I feel so incomplete!

grp, I wish I could help you, but hey, this forum is awesome. These members are the best. I have never seen such a caring bunch, and what is so amazing is that we have never laid eyes on each other, and yet we are like family. Isn't that awesome. You want me to tell you something funny? I don't even have time for my sisters anymore, I used to yak with them over the phone all the time. I don't even do that anymore. This is where I want to be! God bless!

Irma
 
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Irma, So sorry to hear you story. Was your son young ? THat's terrible. I love my dad, but lets face it, he is old and lived a long fulfilling life. When time comes (and it does for everyone), we will say good bye to him with tears in our eyes but knowing that he is going to some better place (don't want to get into faith issues here). But I know your grief is much worse. I can't imagine what it would be like to loose a child. May God give you the strength and blessings to make the best of your lovely life.

grp
 

califsand

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Grp, with life support, such as the ventilator that you're father is on, he may hang in there for a while. I'm surprised that he was okay with a machine that helps with breathing, it seems that most ALS sufferers don't want to let it get that far, where they are unable to move and their life consists of just laying there. My father has given me very specific instructions, both written and verbal (back when he could still talk) that life support is NOT an option. ALS will eventually take away all ability to move muscles but maybe not his eyes. Eventually, ALS will take away his ability to initiate the drawing of breath, I assume so anyways.

Hang in there and know that most of us understand how you feel. It's tough to lose a parent, it's awful to watch them suffer from this illness but when the suffering ends for them it will not be a bad thing. Sad yes, but joyous at the same time.

My Dad has had symptoms since 2003 at least and was diagnosed in 2004. His independent and stubborn streak have kept him going. He can hardly walk but he forces himself to do it anyways with a walker. It's the scariest thing ever but I let him, as much as possible. I know him and I believe that when he can no longer get up on his feet, he will pass away soon after. My job is to make sure that the family accepts it (I have several siblings) and lets him go. Sadly, Dad is only 58... there are going to be many grandchildren of his that will not have had a chance to meet him and that is hard to accept. Fortunately, his personality has been so strong and his legacy will live on forever in our family.

I'm sorry that I can't really share your experience because my father can still move. Did you Dad want to have help breathing? It's hard to see it being quality of life for him if he can't move or respond to family. Then again, he may get great joy out of each visit from you and others that care for him. He may feel joy at each bath, each kiss on the cheek or forehead and just from hearing people when they talk. The only suggestion that I can say is that if Hospice isn't involved, they should be. They can give you and your family a lot of guidance during this experience.
 
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life support

HI califsand, Thanks for your reply. We did not really get much time to think about whether or not life support was a good idea and / or the long term consequences of it. I mean, who has ever seen what living on ventillator looks like untill you have to do it yourself. Sure, the doc told us what it would be like but obviously not in all the gory detail. And yes, we did have some idea, but when you are faced with a choice of letting him die or letting him live with a machine, its not so easy to let him go without treatment. When you are faced with a respiratory emergency, it was hard to think in terms of, oh well, he will die eventually anyway so lets just let him suffer thru a few minutes or hours of painful breathlessness and then it will all be over for the better. It was much easy to say, lets take care of this immediate problem and worry about tomorrow later. Of course, once he was on vent and we saw him stabilize significantly (at least in terms of vital signs) its impossible now to remove the vent, which I believe would be murder. Unfortulately, he was in too bad shape to communicate his will when we took the decision, and when he was well, we never really broached the topic. Things happened rather quickly, in a matter of months.
Anyways, like you said, who are we to judge whether we made him worse. We don't know what's going on in his mind. He might be happy just to be with us.

I guess life support is a life saver for us weak minded people who don't have the courage to take on death sooner rather than later. The pay off is of course a agonizing slow end.
 

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Life support

I am very sorry to hear about your dad. We had a similar situation with my mom. She was on life support for 3 months. I hope I can be of help in sharing our experience.
Norma
 
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I can't even spell my own name.

Norma
 

Al

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Maybe not but I can Norma. LOL.
 

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Thanks Al. Also please say hi to Myrna for me as well. Thanks Norma
 
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