2dreams - Its Spring In Mississippi w/pallet bed pic

[snapshot]

I'm so sorry about your husband! I am glad you are both taking nothing for granted. That is the way I try to live. Thank you for your post and I will keep you both in my prayers!

 

[Beekissed]

Thanks QA - I am glad to be back posting.

FC that was my exact thoughts. All that work, time, money - gone. I found ducks to be so much more work than peepers. But my granddaughter loved those ducks so I will probably bite the bullet and get more. I guess I am just a glutten for punishment.

DH will probably not make it through the winter. Normal for ALS is 18 to 24 months from date of diagnosis. He was diagnosed in June of 2010. 18 months will be December and he is declining fast. But just so you all know we are both ok. At this point we will both be glad when he no longer has to deal with it. Its been much tougher on him than me. I am just the caregiver and know there is an end for my part in this. He has always been so active and busy I think the sitting and doing nothing has taken more of a toll on his mental attitude than the disease has taken on his body. We discussed all the options at the beginning, he made up his mind how he wanted things to be, I have made as many of those things happen as I possibly can, we laid the rest of it down and have lived day by day after all the decisions were made. We so far have gotten the most and best we could get from each minute. You can't ask for more than that. We all have a limited amount of time. Its just that until someone actually puts a dated time frame right in front of you, you don't really accept it. So my advice to everyone is live, love, laugh as often as can. If you get angry and upset about something remember, 100 years from now it won't really matter so don't waste you time with it.

You both are very brave. A scary and sad disease....one of my favorite patients and his wife are going through this right now also. They live next door to me and it is a hard thing to watch. He is in the same place as your hubby...he knows exactly where he is going, knows what he wants to happen with this disease and has opted to not go with a ventilator or feeding tube when it becomes time. He is currently on a pain pump and can no longer swallow.

I'm glad you are going with hospice...you won't regret the decision, I'm sure. My prayers are definitely with you both and I can't understand exactly what you are going through but I can empathize, having had many ALS patients in my career. Please take care of you!

 

[FarmerChick]

I can not imagine the relief that communication has provided for you and your husband thru this whole ordeal. While it truly never will be easy, communication on something natural as an end of life is so important I believe. You stay strong 2dream! Your family is in my prayers.
I truly hope Tony and I can be strong in the future also! Your words and actions do inspire.

 

[2dream]

You are all so sweet. Thank you all for your support.

Bee - hug your neighbor for me.

I was not raised in a house that did volunteer work. Both my parents worked full time jobs and struggled to make ends meet. There was not any spare money or spare time. Not having that in my background I never gave volunteer work much thought. Neither of my children were ever taught to think about volunteer work either. But now - seeing where I am and having gone through what I have I realize the importance of volunteers. And even though I have not had to utilize any volunteers at this point - I know that the service is available if I need it. And it has really made me realize how very important these people are. That is the one thing I have promised myself. When the time comes - the world will have one more volunteer.

 

[dragonlaurel]

He's lucky that you are his wife. You are an amazing woman. This is one of the hardest things to deal with, but you are very strong and are remembering to help make the time that is left special.
I'd been feeling cranky earlier over a bunch of dumb stuff, and just went in and hugged my hubby.

 

[i_am2bz]

So sorry to hear what you are going thru, 2dream. You & your family will be in my prayers.

 

[Beekissed]

That is the one thing I have promised myself. When the time comes - the world will have one more volunteer.

I believe that all things that happen to us can teach us something valuable....both good things and bad things. Whenever I get to pondering on why bad things happen to good people, I always seem to come back to this fact...all happenings can be turned into something good in one way or another if we only look hard enough.

 

[2dream]

Amen Bee - everything is a lesson of some sort.

DD built a small bonfire last night to roast marshmallows with her 15 year old son and almost 3 year old daughter (better known as Ms Emma). Emma had a ball until she burned her hand slightly on a marshmallow. Of course she had to have a bandaid which meant she had to come inside. I took one look at her and laughed. There was smutty sticky from head to toe. She kept trying to show me her hand and all I could see was black smut and white sticky. Her hair was glued to her coat and face. She also decided she needed to hug the dog which added brown dog hair to the mix plus sticky all over a 70lb dog. I finally inticed her into a bath with the promise of Bambi afterwards. Her hand is fine. Just a little red but of course we had to apply a bandaid. Bandaids cure all ails according to the wisdom of a 3 year old. Kinda like a spoonful of honey water will cure her "I can't do that cause my back hurts" excuse.

 

[deb4o]

2dream, was glad to hear that you have a wonderful evening with your DD and grand children, would loved to seen Miss Emma in all her glory!

Please be aware that my prayers are with you as Iam sure are all member of this loving family we have here.

Enjoy the good times and learn from the bad.

You my fine woman are my new hero! Stay strong!

 

[Quail_Antwerp]

sounds likes a wonderful evening with your DD and grands! Marshmellow stickies are great!