how do I know how much time I have with my dad

[dserp]

My dad was diagnosed by a local doctor in january of 2014 and we wanted a second opinion so we waited to go to an ALS specialty hospital in Houston and they confirmed ALS. Since then my dad has lost his speech completely and has had to have a peg tube put in. His legs seems to be getying weaker everyday almost now to the point he can't use them. He can stand up or walk anymore and his right hand has no use. His left hand is somewhat still able to move but doesn't have a lot of control with it. Last time he was evaluated he only had 50 percent lung function. He has made communicated to me that he is miserable and does not really want to live like this any longer. My dad being a god fearing man he is comfortable with what the after life brings. As bad as that breaks my heart to think of my dad no longer being a round it also is very hard to know that he is miserable with his life to the point he is ready to die...I guess I'm asking with all I have described is there anyway of knowing how long I have left so I can mentally and physically prepare myself. My mother and sister are having a very hard time with all of this as well am I but my father has asked me not to say anything to them about him being ready to go, so I feel any incite on how long I have or any tips would be greatly appreciated...

 

[affected]

Oh I'm so sorry for your fathers diagnosis. This is heart wrenching to watch.

We cannot tell you how long he has, nor how fast it will continue to progress. I know the feeling of wanting to know, but each person with this disease is different.

Having said that, it does sound like he is progressing rapidly at this point. How long has he had obvious symptoms for? For some, the progression can slow down suddenly and level out for a while.

For others, there can be complications such as falling causing injury that hastens the progression, or having an aspiration episode leading to pneumonia, again hastening the process. This is why it's impossible to say, as if he stays safe, and happens to have a slowing of progression he could still have a lot of time with you.

I can tell you that my husband was also bulbar onset, it went to his hands/arms next, then his breathing muscles and his legs last. He had many falls, 2 of them serious and hastening his progression and an aspiration pneumonia that was the beginning of the end. He had around 9 months of noticeable symptoms before he was diagnosed and he passed 11 months after the diagnosis.

We have others here with bulbar onset that have far less rapid progression and are still living with quality 2 - 3 years later. So there just isn't a formula I'm afraid.

We can offer support to you and you could suggest your dad join here if you have a way for him to use technology such as eye gaze or a switch.

 

[cheerleader]

We would all love that crystal ball. Unfortunately, none is available. My husband told me the same thing about being ready- and was granted his freedom shortly afterwards. My only advise to you is to live every day as if it is the last. Say all those things that are in your heart, and never miss an opportunity to let him know the difference he made in your life.
There is NO WAY to prepare! From the day of diagnosis, our grieving process begins, but that doesn't mean you can't cherish each and every day. My daughter said she grew closer to her dad during those last few months of his life than she had during all the other years. This is your chance. Even if he can't talk, you can. Recall all the happy moments, the things he taught you, and traits of his that shaped your life. Look at this as an opportunity that most people don't have because they don't think about the fact that life could end at any time. Keep us posted.

 

[starente15]

So sorry to hear your dAd was diagnosed. I'm in a similar situation with my own father. My gut churns every day wondering about all the same things. I try really hard to live minute by minute and be thankful for each relatively good day because no one knows how things will go. It's a rollercoaster ride no one wants to be on.

 

[dserp]

Tillie
he has had obvious signs that we now know to be signs since Nov of 2014 started out with slurred speech, and then after that the other symptoms started quickly after. I had never heard of anything until this, so knowing what the symptoms are we now know what we thought was just stress and being tired were signs of ALS...

 

[dserp]

Starente 15
The gut wrenching of seeing him like this is the hardest part.my dad has always been a man that everyone else depends on and now everyone helping him kills him and it makes me feel almost like I have been kicked in the stomach every time I leave him and I am lucky to live in the same town as my dad but every time the phone rings I'm scared what it may be...also because my mother is primary care taker I am depended to be there every afternoon to help with him because iam the only one physically strong enough to lift him. So i can tell it is wearing on me a good bit, but I have the mentality to do whatever I can for however long I need to. My dad is my bestfriend and I will do anything for as long as I can to help him.

 

[dserp]

Also would like to say thank you so much for the 3 of yours reply was hesitant of doing this but am glad that I did for sure it's such a relief to have someone to talk to...thank u all very much...

 

[starente15]

He's lucky to have you there. I don't live close to my parents so it becomes extremely stressful when I hear things but can't see what's going on. Make the most of every day. He knows you're there for him which is awesome.

 

[affected]

I'm a little confused but it's probably a typo.

Your profile says your dad was diagnosed in June last year, but now you say January this year?

If his symptoms started with slurred speech only last November it would be amazing to have a diagnosis so fast, usually it takes months just to get referrals and appointments in place.

So I'm wondering to you mean Nov 2013?

Don't mean to sound picky, but getting this straight at the beginning here will help us all to support you better if we are a bit clear.

EDIT: I just saw that one problem was I read January 2014 as January this year! MY BAD.

 

[ECpara]

Dserp, as others mentioned we just don't know when the end will come. My husband's bulbar onset has followed a somewhat similar path as your father, although slower. Onset was April 2011, diagnosed Feb 2012, lost all speech by early 2013 and completely fed on a PEG by early 2014. His limbs are beginning to show atrophy and weakness but he can still walk and use his arms and hands. However, as good as all that sounds all his lung tests (FVC, lung volume, aspiration) were in the 20s at his most recent clinic appt. Ten months ago those scores were in the 60s., five months ago the 40s. They are plummeting. So I'm going through those same feelings. It's a wait and see, we have to just try to enjoy every moment with them. No one can truly predict. Blessings to you, your father and your family as you face this incredibly horrible disease.

 

[Vincent]

As someone in your father's shoes, allow me to join in. Being a God fearing man as well, I understand what he is saying. The disease will do what it will. It is what it is. He's not giving
up. He's just saying it's ok. Accepting the inevitable doesn't mean giving up, it means fearlessly being ok with the next step. My father went through a 12 year battle with cancer, in and out of the hospital. All high stress to the point of telling my wife at a particularly stressful day" you wonder why I started smoking again? I should be shooting heroin." He lived another year. When he died all I felt was blessed. Not that he was gone, but for the incredible bravery he had in the face of impossible odds. In the end it WAS ok. He went to be with God.
Vincent

 

[Jeanau]

Thank you very much for saying this Vincent! I agree that acceptance is not the same as "giving up", and it is too bad that people believe that a person has given up when he or she has simply accepted the reality of the situation.

 

[dserp]

Vincent
I understand what u are saying about him not giving up. I realize that he is miserable and he and I have had the conversation and I try and make it clear that I do not think he is giving up, but I also do not want him to think that I want him to die, or stick around and be miserable for me...but like I said in prior thread just wish I knew how much time we have left. I go over everyday from 5 pm to 11 pm to give my mother a break, but that seems to be wearing on me both mentaly and physically. Seeing how miserable he is everyday hurts my heart, I just wish I could do something to help him and that is the hardest thing is that I can not.

 

[4tloml]

dserp--

was hesitant of doing this but am glad that I did for sure it's such a relief to have someone to talk to...

Glad you're here, too. It's a good place to come for information and support. We understand the fear and uncertainty and the frustration of unanswered questions. But we share what we know, even though sometimes it's that we don't know.

Vincent and Jeanau,
That's a good reminder. Thank you. As a CALS, that serenity of acceptance is hard when I want to stomp my feet and fight this thing and keep every last speck of my PALS here with me as long as possible. I hope I'll have the grace to embrace it when he does. Continued grace to you both.

 

[starente15]

It is so incredibly heartbreaking. Some days I have no idea how I will ever cope when things get really bad. We seem to be in a bit of stabilization right now and I dread the day things start picking up. I have to take klonopin just to sleep at this point. It's so hard to focus on one day at a time. Make sure you take care of yourself as well, i.e., eat, sleep, vent/talk to people.