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Cyn, I don't know if you have heard about this... The ice bucket challenge to spread awareness about ALS... It is now spreading like gunpowder on social media, and I think it is wonderful because people hear about this disease. I have myself only been aware of it since yesterday, after seeing country artist Darius Rucker take the challenge, then challenge other artists to do it. It's like a chain, one does it and challenges others etc here's an article I found about hockey players doing it too
I just got done watching a video on facebook of my daughter ( 900 miles away) taking the ice b ucket challenge. I broke down listening to her say in a few words what ALS did to her mother ( my wife)
She also got her brother-in-law, sister-in-law, 5 year old niece, post videos of them taking the challenge.
As my daughter said............" before Mom got diagnosed in March 2011, I knew nothing about ALS. Since then and up to Mom's death on Thanksgiving,2013, I learned a lot "
Proud of everyone who took the challenge to raise awareness.
My wife would be proud of them, also.
Cyn, in my opinion I think it is time you might have to make that "tough decision". ALS doesn't progress at the same pace over the length of the illness. It progresses more rapidly as time goes by. Apparently the nurse is already noticing that happening. Everyone knows you are and have been making a herculean effort to take the best care of your DH that you possibly can. And you have and are doing a great job. But the fact is you are going to need help.
When my Dad's illness (cancer) and my BIL's illness (ALS) got to a certain point both families had to face the reality that we needed help. We had to make that tough decision. Looking back we realize it was the best thing we could have done at the time. It was best for us and the patients. I hope you will give strong consideration to getting that help.
I've followed your ordeal almost from the beginning. I don't post much but you and your DH are in my thoughts and prayers so when I feel like I might be able to give advice that might help I post. And I highly recommend Hospice for the help and support they can give.
I signed us up for Hospice today!! They came over for an evaluation and asked DH if he would agree to a DNR--he said he would have before the vent if he knew what it involved and how he was going to feel. Sigh.. But at least we are now with Hospice and it sounds wonderful. DH still thinks he is going to be able to go to the ALS clinic--which would be fine as Hospice does not stop that if we had a way to get there but to hire an ambulance is beyond our means financially as it is also the same story for him to see his private doctor--which is allowed by Hospice but again no way to get there with a ventilator. Obviously DH's son has not came up with a van and as far as my truck---I have no idea what is going on. So what is new. But it is a good day--and I do feel good about Hospice. Also my wonderful neighbor who's father has ALS has been doing so much for us....a little angel for sure! She has been bringing me dinner for 2 days and a submarine sandwich today at lunch. I am blessed beyond belief!
Yes! I already received a call from their social worker and she wants some of their volunteers to bring me up a few meals to ensure I am eating properly---did I die and go to heaven already? DH is very sad with finally admitting he no longer wishes to fight this ugly disease. He is so strong and strong willed I am sure it was difficult to accept. But he did--it was completely his decision. We are also having a Chaplin stop by to talk with us--another God send! God is good!
Cyn, hope this lightens your load lots and lots. I'm so happy he agreed and wishing that you get the best care ever from your Hospice team. We actually had the same group with both my FIL and MIL and we were like family, we took a cruise with the Hospice nurse and are still friends to this day. I'm going to be celebrating you two tonight! Not celebrating anything but your getting some necessary help!
The lady chaplain we had was not of my religion but was great.
When her visit with my wife would end, my wife would be smiling and content while the chaplain and I had teary eyes.
The Hospice workers and chaplain wrote wonderful tributes on my wife's obituary page after she died.
They were so touching I still read them from time to time (9 months later ) for strength and inspiration.
So now the Hospice is all set up but for some reason I am feeling blue--sad. I suppose it is just the reality of it all. DH was crying so I cuddled up with him on his hospital bed and snuggled and told him we will be fine. Life sure isn't easy.....At least one big step has been taken. I am so tired--DH woke up--wide awake at 2am again last night and I could not go back to sleep. Long night and after all that happened today, well I am very emotionally and physically tired so night everyone. God bless you all!
Cyn, I understand how tough it has been, but now you are going to get the relief you need. That means more quality time with your husband, and that is precious.
Big hugs.
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But at least we are now with Hospice and it sounds wonderful. DH still thinks he is going to be able to go to the ALS clinic--which would be fine as Hospice does not stop that if we had a way to get there but to hire an ambulance is beyond our means financially as it is also the same story for him to see his private doctor--which is allowed by Hospice but again no way to get there with a ventilator. Obviously DH's son has not came up with a van and as far as my truck---I have no idea what is going on. So what is new. But it is a good day--and I do feel good about Hospice. Also my wonderful neighbor who's father has ALS has been doing so much for us....a little angel for sure! She has been bringing me dinner for 2 days and a submarine sandwich today at lunch. I am blessed beyond belief! 
