Well .. this just sucks!

[ReneeM]

I just had the Dr order Hospice for my hubby.

First diagnosis on Aug 30th this year .... to can't breath without the Bipap and can just barely stand or take a few steps.

Hospice nurse is coming out on Sat morning... our 28th anniversary. Somehow I feel like I am giving up... I know he will be so much more comfortable... and safer with Hospice care at home.and the family volunteers I now have.... since I work full time.

Still.. after our informational meeting last night with Hospice.. he just looked at me with those puppy eyes and he too had that I'm giving up look. He sooo wanted to keep fighting this but his progression is so fast. I am just barely staying one step ahead of his symptoms.

Sorry,to complain, I just don't know how to handle this so fast. He is slipping away day by day.

So many tears at night...I wake up every morning trying to put my brave face on for him... it's just getting harder to do every day!

 

[brooksea]

I'm sorry you are at such a point, but I know hospice will be of much help to you.

Although my husband has not progressed as fast as yours, he also is to the same point.

Good luck to you! You aren't complaining, just letting your heartfelt emotions out. That is perfectly alright and we will support you here on this forum.

 

[Okie2]

This is the place to let out everything that needs let out. People are here to hear you and be a support when no one else can. So sorry anyone has to go through what you are. My thoughts are with you and your husband.

 

[Ms. Pie]

You're not complaining Dear One. You're just venting. It sure isn't fair is it? I pray for God's wisdom to guide us all.

 

[judyroyalglenn]

My family had a great experience with Hospice for my mom. She told us we could call her in the middle of the night if we needed to. Ask questions, and get all the info you need. I know it is tough. I also tried to be strong in front of Mom and also cried when she could not see me. Keep strong and as tough as it is, enjoy each day you have together I will pray for ya'll!

 

[EGBAR]

ReNeeM we are here for you. Let us know what you need and we will try to provide thew support, I wish I could help more.

 

[grandmommyk]

You are completely right. It does suck. I am so sorry that your husband has ALS and that it is progressing so fast. I can't imagine that you could feel any other way right now.

 

[ruthiep]

I agree, ALS does suck! So sorry that things with your husband are progressing so quickly! Thoughts, prayers and loads of hugs being sent your way!

Ruth

 

[cervus]

I don't think either of you should feel like you're giving up. You're accepting the fact that ALS is progressing and you both need more help. That's OK. And yes, it's a difficult, difficult time and there are no words to make you or your husband feel better. I'm so sorry you're going through this. I've been there. Lots of warm thoughts and strength......Yasmin

 

[Georgia Peach]

Glad you found this forum. My husband took his last step about one month ago before he went to ICU for a week.

This is the club that no one wanted to join but here we are. Keep fighting because everyday is a blessing. I go to bed tired and I wake up tired but I know I can sleep all I want later.

 

[ReneeM]

Thanks everyone for your support and kind words.

Just knowing I can "vent" here is a comfort!

 

[jwife]

Vent away. This is the place to ask any question or scream at the top of your lungs. Sorry that you find yourself here. WoW! It does sound like a fast progression. Not much experience with hospice, but I do not think it is the final giving up point. From our experience the rules for hospice were somewhat more lax than those for home health care. Hospice encourages you to try to stay active, to take trips if you want to and will even help with referrals if you are traveling to a different area or state. Home health care expected you to be home for your visits and had to cover if you were not. The one thing you want to make sure is that you have all the medical equipment you will need such as Bi-pap or cough assist. I think they are harder to obtain under hospice care. Maybe knowing some of this will help you and your husband feel less threatened by hospice. Best wishes as you you struggle with this monster of a disease. You are right. ALS DOES STINK!
Janis

 

[Mrs C]

I have just recently begun to accept and truly deal with this rotten disease, and it has been a year since my hubby's diagnosis. I can't imagine having it progress at the rate you are dealing with. I can tell you this: last Feb. 11 we lost my niece in a car accident. We never got that precious time to say everything we wanted. When my dad was diagnosed with a glioblastoma (brain tumor), he was gone 6 months later. From these experiences I have become grateful for each and every minute we have together. It is thee most precious gift, and we make the best of it. Do we take trips or go anywhere special? No. We just spend time together living, loving, laughing while we can....because we can. I hope you find the good times are more outstanding than the bad....and that you find strength in the love you two share.

 

[ReneeM]

Thank you for your kind words. Yes, we do share even the small moments. Our 28th Anniversary is tomorrow. It is also the day the hospice nurse comes out to do the eval and sign us up. Oh Well... we'll enjoy a meal from our favorite restuarant later!

 

[mabeloo]

My husband was diagnosed in January 2010 and is now completely dependent on me. He has just started taking his nutrition by PEG tube, but can still speak. We decided to get Hospice involved after we went to a Support Group meeting and discovered that another gentleman who had bulbar onset disease but was still ambulatory was getting their help. When his wife mentioned that he was getting a massage the next day, Brian and I looked at each other and pretty much said, "What are we waiting for?" Long story short: Hospice is wonderful and you'll be so glad you did it.

Have a wonderful 28th Anniversary and get that favorite meal! Don't put off anything till tomorrow if you can help it. And I'm with you, ALS Stinks!