Pity Party coming on!

Status
Not open for further replies.

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
I agree Linda. We are all warriors in this battle. If not we wouldn't be here - we would be long gone. This party is a place to express ourselves. If it is anger, frustrations, fears, shattered dreams or just dealing with life with our PALS. I love this party because it's like having a group of good friends who are there for you. Who can lift you up when you are down, say a kind word, make you laugh. Most importantly to me - understand the nightmare we are all going through. I raise my glass to each and everyone of my CALS. Best party I've been to.

Thought I was a closet eater - no - I'm a laundry room eater.
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
Good morning ...
Well.. one big drama..GONE! Gave the dog to another veteran that has 2 others... WHEW! feel better today! I got up and didn't have to worry about what he tore up and took outside.
So you are talking food...my husband can still eat, I do have to cut his food up.. but he loves his Texas Roadhouse.(I have scissors I use). it does take him 3-4 hours to eat..and I worry about choking on the excess saliva (he is due for botox in his salivary glands...and he is waiting on the refill for robinal. Been a little extra stiff the last couple days.. out of Nuedexta, which keeps him moving.
He also has special forks he eats with.. they have a grip plastic handle and the fork bends to wherever you need it...we get them from the VA but I will see what I can find online. Also.. we use disposable bibs when he eats.. they are AWESOME! we get them online like at Dr. Leonards...or amazon..Adult disposable bibs.. paper on one side, plastic on the other to help keep them from leaking...
we bought him a desk.. just a flat 5x3 desk and put it on bed risers (you can get them at walmart) and he has a laptop there.. its just the right height for his in his chair...if I think of any other ideas,, I will post them... hope you all have a great day! not looking so bad here so far...(besides the 10 below and snowing!)
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
My PALS can eat anything, although sweet stuff seems to make his saliva thick and he has to do a lot of throat clearing. He is unable to feed himself at all, except at breakfast where he has a smoothie. He has this really neat cup holder that he got at the VA that is adjustable, they use it in the hummers in Afghanistan to hold their drink while they go over the rough ground. I put it in front of him and he uses a thick milkshake straw and sucks it up at his leisure. I miss sitting and eating a meal and just feeding myself, or eating a treat real slow as I enjoy it. My husband does not seem to have any problems now with his weight, and actually declines snacks saying he is watching his girlish figure. He was always a slender man but now is pear shaped due to lack of muscles. He puts his weight on his bottom which makes getting in and out of his chair a challenge at times. So I feel guilty when I indulge, although I should be watching my weight as well. Being in my 50's and all that goes along with it sucks. I was used to eating what ever I liked without gaining weight. Now I look at the wrong food and I gain weight.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Time to propose a toast:
Live, Love and Laugh!
Live our lives to the fullest, Love our mates to the maximum and laugh till we pee our pants!
Hugs
Linda

I'll drink to that!
Mind you I nearly did pee my pants laughing, being in my 50's and all that is not so much a figurative phrase anymore!

Rhonda I got such a vision of my PALS only around September/October last year or so when he was still eating like you describe and it reminded me how fast he suddenly went from that to total puree being fed to him.

I am going to feel so much better now hiding and eating something occasionally, and I will always feel like you gals are hiding with me like we did in high school and giggle my way through whatever the food is, rather than feel guilty. CALS unite!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
well I'm not sure what I said, but I'm sure the moderators will let you all read it soon enough :mrgreen:
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Was up last night 4 times. Too cold, too hot, suctioning and urinal duties. Oh well! Thought I'd share some of my wicked southern humor. I'll call it "Wanted to cry - laughed instead". This all has happened in the last few months.

Joe who is bedridden, won't wear depends, unable to sit on bed pan, had a major blow out one day. Poop Patrol is what I call it. Wanted to cry. I looked at him and said "I've told you for the last 43 years you were full of it."Laughed instead.

Unable to brush his teeth any longer. Brushed his teeth and handed him a container to spit in. I could tell by the look on his face something was wrong. He's unable to speak. I had given him the urinal with pee in it. "Good thing you didn't want a sip of water". Wanted to cry - laughed instead.

Told him about the condom catheter and he's shook his head no. Wanted to cry. Told him not to worry I thought they made them in XXlarge - laughed instead.

It takes sooooo much energy out of me to cry anymore, I try to laugh instead. There's nothing funny about this journey but laughter is good for me. Hope I brought you a little laughter today! Be back to the party later.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I think some call it black humour Debbie, it's the only thing that keeps us going sometimes.

Recently heading in to the house for the last of bed time routine I asked did he want to pee, yes, so I said then turn left not right, let's keep going whilst you are barely moving! We were both laughing so hard I had to hold on to him to stop him falling over literally.
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
This is the best party I have been to in a long time. I don't have to tip toe around the elephant in the room.
I don't know about you gals, but our neuro told my PALS that ALS does not affect the person's brain. So now he thinks that the reason he gets so mad all the time is... ME! After all this is over I am going to make an appt with the neuro and give him a piece of my mind.
 

Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Fight night with the hubby! Not literally, we're watching UFC! And I just started reading through the post, oh my gosh Debbie, I busted out laughing, Ronnie says "what" so I read him your post, he starts laughing, then got real serious, and says, you better not do that to me..... Then laughter again as re member some of the things we've done!
Thank you!
Just wanting to say thank all you ladies! I get before him in the morning, have my coffee, let the kids out( our dogs) and usually catch up on shows I've recorded, but this morning, I came here to the forum, and it was like you all gave me a boost of energy that I haven't felt so far in this journey. So when " my knock " came, that's how he lets me know he's up, I went in smiling and in a good mood, and we seriously have laughed and had one of the best days ever, in a long time!
Never realized how much MY mood effected him. I'm gonna learn a lot from you all, so hope I don't get on your nerves with the questions..... Thanks again, and God Bless
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Oh man, some funny stories! Debbie--keep laughing--it is so much better than crying! Rhonda--congratulations on the un-adoption! I love my dogs--but no way I would get a puppy! Sissy I am glad you are feeling better! My husband and I watch all the Alaska shows together. OMG I am so sick of all the "gold" shows! very macho.

and to all you sneaky snackers...you are using your poor pals as an excuse. Ha! I was sneaking chips and cookies way before my husband got ALS! I bet you guys did too. ;)
 

mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
Country
US
State
MI
City
Grand Rapids
Hey there Ladies, I love reading these posts. I especially liked the one about Tip toe ing around the elephant in the room. I tried counseling for myself once, just to get out the frustrations and all the counselor wanted to do was to say how strong and brave my husband was. I knew he was that - I wanted some help for me, and to talk about that big elephant
Now that my husband (PALS) gets pretty much all his nutrition from a peg tube, I don't hide eating at all - but I use to. I wish I had a funny story to tell to cheer you all up, but I don't. So I will just sit here on this comfy hospital bed, while my PALS relaxes in his chair and pretend to like the western movie that he wanted to watch together. :)
 

Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Oh my gosh Barbie, we record all the gold shows too, so he can watch them with no commercials! Lol too funny, wish they would all just get Rich already! Hahaha
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Where on earth did I put that, I was sure it was there! Oh yeah I put it there so I could find it! Oh no, not there either. ?
Start to do this and end up doing that, why did I go down stairs, oh well I will do this and probably remember. Back up the stairs, right that is why I went down there! Constant circle.
Hugs
Linda
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
CALS, I just realized it is like going to a dance after working all day. All of the moves are like doing a polka or jive, here there and everywhere only no music or beat and totally unrelenting and unbelievably exhausting!
Hugs
Linda
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
Talking about snacking, my PALS was never a snacker. He was a three big meals kind of a guy. So I can snack as much as I want. Once he started getting most of his nutrition through the tube, he says he doesn't really crave for any real food. Our kids baked a ton of cookies over the holidays and he did not mind us munching on the cookies while watching pirated Downton Abbey (We told ourselves we are not really doing anybody any harm because we support our local PBS station :)
Talking about Downton Abbey, anybody interested in starting a petition to ask PBS to broadcast the show in the fall when it first airs on the other side of the pond?
 
Status
Not open for further replies.
Top