Today is not a good day

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panguinjen

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Mar 27, 2012
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529
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Lost a loved one
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US
State
CA
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Stockton
Poor Rog; he lost his mom in January and this is the first Easter without her, feels really tired and can't keep his eyes open, can't eat ham and scalloped potatoes (his favorites), can't talk...I don't know how to make it better....we'll just slog through this day...
 
I'm sorry pan. Do you both ever go to ALS support group meetings or get any sort of counseling? It might help if you do. Hugs to you both.
 
Hey, Jen, I'm sorry that Rog is having a rough time today. Praying that tomorrow is better for the both of you.
 
Sometimes, all you can do is get through it. I hope tomorrow will be better.
 
You are doing the best you can. Hang in there.
 
Thanks everyone! Support group meetings happen while I'm at work and he won't go alone...maybe this summer I can get him to one....he seems better now, smiling and awake...
I see a therapist on a regular basis to keep me sane....Insurance has offered him the same and he hasn't chosen to partake....
I think he's a bit housebound as he hasn't felt up to driving and is getting over a nasty cold....
We will get through...just have to find a new normal, although that changes frequently :/
One moment at a time today....
Your encouragement and ideas help!

Jen
 
Hang in there, Jen. Up and down days are par for the course for us. It sounds like you're doing great
 
Hoping tomorrow will be a better day for both of you.
 
There are good days and bad days--I am glad to hear he is feeling better now. I always worry when my husband is feeling weaker than normal or wants an extra nap.
 
Jen, can he eat pureed foods? Scalloped potatoes are EASY to puree and you could do the ham separately, or even with the potatoes... and still be able to enjoy those flavors.
 
Jen, I made ham and sweet potato's yesterday, Dean's favorite. Bless his heart, we pureed the ham and the potato's and he still couldn't eat without choking. Every day I hate this diseae more and more. Makes me feel guilty when I sit and eat and he can't!
 
Maybe it would do you both good to play hookie for a day and go out and do something? Holidays are hard when one is dealing with the first one without a loved one.

Hope today is better---as for the meetings--can you get a day off or switch a few hours to go? The solidarity might do you both some good.
 
You are all amazing! Thanks! Funny man didn't even want me to cook those foods so I had a hamburger. I asked him again if he wanted to go to a support group/counselor and he said he'd think about it after school gets out so I can go with him...Said I'd take a day off and go and he's concerned about all the time I've already used.

We have a lot of outings planned..We just need to come up with holiday activities away from food....I never realized how much our lives revolve around food....maybe I'll drop some pounds!

He did have a better day...there's a new light in the dining room fixture and a Lowe's bag on the counter so he got out and about, and I didn't dismember any 5th graders (spring has sprung)

Jen
 
Pan,
This is not new to me. I have been a caregiver full time for my wife since Nov,2010. That was when she quit walking. I too am retirement age and was forced into it because of this hideous disease. My wife is such a brave soul. She rarely complains and I have not always been patient with her. She has hit a plateau now, and I can not tell of any further progression. We have many friends that volunteer their time for me to get out and she has really enjoyed their company. It is quite overwhelming at the beginning when you have to learn so much so fast, but you will make it. Trust God to see you through it. He will. I do empathize with you. No ones knows except those that have been there. Know that I am praying for you and your husband and pray that God will ease your mind with all the new things you are having to learn and do.
 
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