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Angelgirl

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Hi friends,
I've been reading the forums for about the last 5 months. My mom was diagnosed with ALS in June. Her symptoms actually started about a year prior to her diagnosis. Her main challenge right now is inability to swallow or speak. She has a wonderful attitude and spirit and she is able to communicate by writing on a small dry erase board. Mom also had a feeding tube inserted in September and is doing awesome...feeding herself every 3 hrs. I know there has been some discussion on whether to have a feeding tube or not...and I say...go for it! She had lost a tremendous amount of weight and was always at the risk of choking. Now she is able to get the nourishment she needs.

The holidays are coming up and of course food is always a huge part of it. Mom is unable to eat anything at all and I feel extremely guilty eating a huge Thanksgiving or Christmas dinner in front of her. Has anyone else encountered this challenge? If so, how do you handle a delicate situation like this. I'd truly appreciate any input. I want to make this a memorable holiday season...but yet...I don't want to be insensitive.

Angelgirl
 

janf

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tift
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holidays

Hello,Angel girl I know this must be hard. I have been diag. and I wounder how I would handle not eating. I know your mom would not want you to not eat so, please don't feel guilty. most ALS patients learn to take one step at a time. We are just thankful to have family and friends with us so enjoy the holidays & God Bless. Janf.:-D
 

Al

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Hi Angelgirl. I haven't had to deal with this but speaking as one who has ALS I think she would be glad to be with everyone and not really make a big deal about not eating and hopefully no one else will. I have to attend a Christmas party with fellow retirees from where I worked in mid Dec. and may not be able to feed myself by then. I think I won't have lunch but wouldn't want to miss it. If worse comes to worse I'll drink wine with a straw as I saw ALS patients do 3 years ago when I was first diagnosed. If you want to be part of things you have to adapt. Sounds like she has done a great job so far. AL.
 

liz

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Angelgirl -

I'm a mom with ALS and I'm positive your mom would want the rest of you to enjoy the holidays to their fullest, including the feasts. And I'm positive being part of all the festivities is what means the most to her. It is great that you are so thoughtful of your mother's feelings. Maybe you could talk to her about this ahead of time so she can tell you how she would like to handle the situation.

Liz
 

CindyM

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Hi Angelgirl. Liz and the others are right. I suspect the day will come when I am not able to feed myself but the isolation of not eating a meal with the ones you love certainly can't be as bad as the isolation of not having the party at all! Your Mom is lucky to have such a thoughtful and caring family. Let us know what she says about how she wants to celebrate with all of you!
 

GinaD

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Hi Angelgirl. I have been thinking about this same thing myself. Last Thanksgiving my dad had just had his diagnosis for about 2 months. He was able to eat some by grinding up the food, and still had some speech. We had a great time, kept up the traditions thinking it would probably be our last Thanksgiving with him. Well, here it is a year later and he's still here! He is now on a feeding tube (continuous pump) and has no words left, things are rapidly going downhill. I have such a hard time eating in front of him on a "normal" day but feel even worse to think of him feeling left out. So....I guess we will carry on as "normal" as possible and take our cues from him. Hang in there and make some great holiday memories!

GinaD
 

hboyajian

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My dad was diagnosed about a month ago. He is currently on a completely blenderized diet, and has expressed wistfulness about eating things he can't have anymore. I eat a lot of soup when I am with him, partly beacause it is easier to have the same thing (only his portion has been blended). He will be getting a peg tube in early December, because it takes him so long to eat and has lost a lot of weight in the last 2 years. I am a sorrowful feeling that this may be the last Thanksgiving I have with him. He is losing strength fairly rapidly, but he is still able to feed himself at this time.
 

southern lady

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I won't be eating or talking

This is my 2nd or 3rd Thanksgiving with ALS (symptoms in04, but diagnosed Mar 05). It is different when the Grandmother of the clan can't eat or talk, but I get to be hostess.
I haved prayed that God will fill our hearts & home with joy and praise & draw us closer to Him & to each other. I've been on tube feeding since Aug06, but no slice of pecan pie or helping of turkey & dressing can come close to the joy of having my family around me!
I have a 20 year old grandson (6'4"), & watching him put food away is phenomenal.
We'll have an adult table & another for the younger chidren, so I'll zip back & forth & store up happy memories for the times ahead.
Most sincerely, I wish all my PALS AND CALS an unexpectedly wonderful Thanksgiving.
My Canadian friends have probably already had yours. My husband & used to love to go to Canada in early Oct to see the foliage. Most memorable Canadian T'giving meal
at the Keltic Inn after driving the Cabot Trail. Then we come home & have Thanksgiving again. Can't have too much thanksgiving. Gratitude helps the attitude.
 

Al

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Well the one thing we know about this disease is that we really don't know a lot about it. Don't fret about next years Thanksgiving. With a peg tube your dad could live for years. Have a happy time this year and worry about next year next year. AL.
 

Angelgirl

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Thank you!

I hope everyone has enjoyed their Thanksgiving. I want to thank all of you who responded to my original post. We just got back from my mom's and you know what? Food wasn't a real issue at all. The kids and grandkids I think were something more desirable for her than pumpkin pie or dressing. We got all the old picture albums out and had a wonderful time of reminicing. It truly is about family and spending time together..isn't it! Thanks again for all of your encouraging words.
God Bless!
Angelgirl:-D
 

CindyM

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Hi Angelgirl. So glad your time with your Mom and the rest of the family was fun and relaxing. You are right-it really is about friends and family! Love, Cindy
 

MtPockets

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You said it all.
AMEN

God Bless
Capt. AL


Angelgirl said:
I hope everyone has enjoyed their Thanksgiving. I want to thank all of you who responded to my original post. We just got back from my mom's and you know what? Food wasn't a real issue at all. The kids and grandkids I think were something more desirable for her than pumpkin pie or dressing. We got all the old picture albums out and had a wonderful time of reminicing. It truly is about family and spending time together..isn't it! Thanks again for all of your encouraging words.
God Bless!
Angelgirl:-D
 

liz

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Beautiful story, Angelgirl. I'm very glad your family had such a wonderful holiday.

Liz
 
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