New here

[CCMominVA]

Hello everyone,

I am a caregiver along with my mom for my father, who was diagnosed with ALS in Oct. 2006. He has been very mobile up until about a month ago, with limb onset. No bulbar symptoms at all, he still is able to eat and drink without problems, and his speech is as clear as the day he was diagnosed.

He is in respiratory failure now, he has a secondary condition of COPD. At his last ALS clinic appointment, we finally were able to get him a Bi-pap and then a Cough Assist. He is using these well, and asks for them now rather than us bug him to use them!

We started hospice about the same time, as he is determined not to get trached or vented. We have had many conversations with him about end of life issues, and he is comfortable with where he is and his life so far. He has had a full life, even at age 62.

I have been reading the forums and have found so much information useful and want to say thank you to all for those who are sharing their experiences.

God bless you all!
CC

 

[marya]

CC, I'm sorry for the reason you are part of the forum, but glad that you have found this place. I'm pretty new too - my husband was diagnosed on 4-27-10 and I stumbled across the forum and it has been a blessing to me already. Mary

 

[handinhand]

Hi CC, sorry about your father. It sounds like you and your mom have made his life as comfortable for him as possible. I am 62 also.diagnosed two years ago with bulbar onset. I am grateful for a wonderful life also..I have a lot to be thankful for but as the days pass me by I hope for a long time with quality of life.... Hugs to you, Linda

 

[CAHPAH]

CC, so sorry you have to be here. Your father's journey sounds much like my wifes. She was diagnosed in Sept 07 with limb onset and is still walking, talking and eating. She has zero use of her hands and last year ALS really started attacking her lungs. Her FVC is down to 28% but she too has decided against a vent. This is a very tough road we are going down, but never feel you are alone. There are many of us here that understand and willing to help. Sending you the very best wishes.
Jim

 

[Miss]

I'm new here, too. My husband was diagnosed on 4/16/2010. He has limb onset, but is showing bulbar symptoms. Things are moving very rapidly. I, too, have found so much comfort here. There are so many people, with so much love and concern as well as incredible knowledge. It has been a wonderful source of information, and an amazing outlet for my fear and pain. You are in our thoughts as you navigate this crazy road we are all travelling.

 

[Blubear]

Hi CC, welcome to our forum. Sounds like you have a lot on your plates hun. Please know that we are all here to vent on, ask questions...lend our support. You hang in there!
Oh my gosh, marya and missy! It feels like both of you have been here for ages already! Love ya both!
Hugs, Kari

 

[JeffP]

hi cc i can see you and your mom made life for your dad comfortable .im sorry though that your here due to this awlful illness .i guess there is not much i can say if he dont want a vent well really its up to him even if you feel the pain .we are here for you like blubear said to vent or to get some answers or compfort from alot of loving souls on this forum it really honestly makes a difference god bless your family jeff

 

[luvnmm]

Good Morning CC
I am also new to the site. It has been very helpful to me and I'm glad it's been helpful to you as well. My mom was diagnosed in Sept 2009 with limb on-set and some bulbar decline as well. I am so sorry for what you are going through and wish there was something more that I could do to help you. Hug your dad as much as you can. I find that a hug can be very comforting. You and your family are in my prayers. Keep us posted on things.
Take care.

 

[CCMominVA]

Thanks everyone! You are all so encouraging!

My biggest issue is that I am moving in 3 weeks. My husband is active duty Air Force and has already moved all our things over to Germany! AHHHHHHH! I hate leaving, especially now! But, on the flip side, between deployments and training, my husband and I haven't spent more than 2 months in a row together in the last 2 years! My boys (13 and 7), need to see Daddy! Anyways, I am thinking I will take the kids over, get out household goods set up in our new home, and then come back here. It's just difficult to know at what stage we are at with Dad.

I have lived near my parents for the last 8 years, this is going to be so hard to leave! My brother and sister live in CA and we are here in VA. Things will work out - praying my siblings will carry their share when I have to leave.

Last night was not a good night....Dad couldn't sleep, so in turn, mom and I didn't get much sleep! Time to try and rest!

 

[brooksea]

I thank you and your husband for serving country.

I also would hope your siblings would step up. You have an obligation that I'm sure your Dad understands!

 

[CCMominVA]

Thank you Brooksea! I think they will...they've just been so fortunate to rely on me the last few years. I'm the most blessed, though, being able to be here through most of it, especially the best times!