Just bummed

[ECpara]

One thing ALS has a steady supply of.....heartbreak. Those of you who have been on here a while know that my bulbar husband was hanging in there mobility wise, even still doing a little golf and driving. Well, today the clubs were put away and replaced with a wheelchair in the trunk of the new car he got back in December that he can no longer drive. He's had a rough week; nausea, weakness, horrible phlegm, on top of a steady dose of reality. He sat me down and went over funeral details, he has it all planned out; obits, eulogy, music, who I need to contact, what needs to be done, etc. We're taking five days and going to the beach to see family and friends. I'm hoping it will be a "pick-me-up" for both of us. He's been in a slump since our Disney trip, can't say I've been a ball of joy either. This disease really sucks.

 

[Atsugi]

I'm sad you're starting this new chapter. Glad that he has it all planned out. I'm always here to help as needed.

 

[skipper66]

Yes, it certainly does suck. My dad is alot older then many of the PALS on here but his mobility and energy has really declined lately. He can still breath well without using a bi-pap and can still eat almost everything. But, they have to feed him now since he has hardly any use of his arms and hands now.
I'm glad you are going to the beach for a few days. A change of scenery and being around loved one's will at least help a little bit in lifting the mood. My dad seems to cope alot better on days in which he gets outside in some sunshine. Sending you a big hug. We are here for you. Feel free to vent or rant anytime. We will listen and we certainly understand. Kim

 

[tripete]

ECpara, there never seems to be a shortage of change in our lives. All I can offer is that you try your best (easier said then done) to make as many good memories as possible. -wish we did not have to die this way.

 

[gooseberry]

I am so sorry it has been one of those weeks. Does he have someone ,if he is able, that is willing to pick him up and take him to his regular golf outings? It has really helped Steve to be able to go and ride in the cart and just see his old friends. Luckily we have had a lot of people coming and going. It really helps keep the mood positive.

 

[affected]

It's true, it just never stops taking.

Those were big adjustments he has made and they must seem so sudden.

Even though some time away won't change his progression, it will allow you both to remember to enjoy what you have and I hope it gives you both a sense of refreshment. Such hard conversations to have

hugs

 

[ECpara]

Thanks everyone. Your care and concern touches my heart. Gooseberry, yes, his regular golf buddy here stopped by to visit and offered to take him in the cart to ride and see everyone. I saw a smile. And our friends at the beach also will take him out in the cart if he'd like. They've been our closest friends for forty years and will go to any length to make him happy. Watching this slow death is so heartbreaking. I'm grateful for what he still has, his hands are good so far so he can type to friends, he can walk for very short distances still, so around the house he still functions, but in short spurts. His arms are toothpicks and he is limited what he can do. His fatigue is overwhelming. The sadness in his eyes kills me. We're both looking forward to this time away. Hope it doesn't disappoint. Thank you all again and sorry for the "pity party". You all have "been there, done that"!

 

[starente15]

So sorry to hear this. We're going through the same slow downhill slide with my father as well. It's so hard to sit and watch and not be able to do anything. I'm glad you're surrounded by people who care and can lift his spirits some.