Pity Party coming on!

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barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Which shoe will drop first, which hand will need splints first, when will he need more help breathing, when do I need to start putting all his food in the food processor, when will I not be able to figure out what he is trying so hard to say and write! Where will we be next year at this time?
Yes, definitely going to have that pity party!
Hugs
Linda
 
Linda, can I join your pity party? I throw the best. Unfortunately I'm the only one in attendance. I'm right where your fears are. Bedridden, unable to speak, peg tube,ventilator and loosing ability to move hands. I think I'm prepared and then something else happens. Acceptance is my new word for 2014.
 
I'm in, don't anyone ever leave me out of a good party!

Already have to puree to a creamed soup consistency, splints (loves em one day, won't wear em the next, which will today be?), no shoes here just non slip socks, what did he say? why does everyone want me to pop back in the room and interpret? work it out and give me a break! Write? I so wish he could write ... Next year? Sheesh today is just starting, I can't even think about tomorrow, in fact half of today is hard enough to wonder about!

Wow, partying with you gals works!

hugs
 
It has been a pleasure to party with both of you, thanks for coming!
We went to our specialist today and she wanted to know what was happening? Of course Barney was feeling really good. Then she asked me, so I told her, his breathing is very short after walking small distances or doing normal chores.. .. Barney denied it. I told her his balance was no good.... Barney denied it. It did not matter what I told her he denied. I did not invite either one of them to the party. He seems to think that just because he has FTD ALS he should be included.
Tillie I agree it really sucks when all of a sudden you are the interpreter! My brother-in-law came over the other day (first time in a month and he lives five minutes away) they said hi I gave him a really bad cup of coffee and walked out to the deck, lit up a cigarette and listened, not one flipping word. I did not stay out long but have got to say some sic part of me enjoyed it.
No doubt we will be partying again soon!
Hugs
Linda
 
I insist he demonstrates stuff ...

... mind you, it is amazing how he gets like a little surge of adrenalin or something and he will walk better, do things a bit better than when it's just him and me. I don't feel he is pretending to be worse when just with me. The observer (PT, OT, Doctor whatever) always clearly see the state he is in, I just think, wow you did that well ;)

I think parties are a great outlet!
 
Is the party still going on? Last night was another heartbreaker. Joe rang the bell last night - only once - not so bad. He had dropped the urinal in the bed. Urine everywhere. Even with the double chux he was soaked. Had to clean him up and put another chux in the bed. He is loosing the ability to use his hands. By the time he calls me to help him it's too late. What to do? I can talk to the doctor about a cath but that's just asking for UTI's. Any ideas my party girls?
 
Good Morning Debbie,
Sorry you had a tough night. The only thing I can think of is Depends? I do not dare tell you what else I thought of, ( I am going to try and keep this nice) His pride will be a tough one but maybe if he thinks he is saving you a lot of work you may be able pull it off. Good Luck!
Hugs Linda
P.S. Pity parties are standard, any time you feel the need we will probably need one also.
 
Hey Linda,
That's about the only thing he has left as far as humility goes. Does not want to wear depends. Bless his heart - what's next? You know how stubborn men are at times. He will agree to do something one day and refuse the next day but never agreed to Depends.
 
Debbie--I take care of the urinal at night for my hubby( no arm or hand movement left). I keep it on my side, and slip it on when he needs it and then place it carefully on my night stand afterwards. He sleeps on his side, and nekked from the waist down for easy access.

I won't lie--I have spilled it a couple of time in a sleepy stupor! Once I was so sleepy that I pulled it off and instead of tilting it upright- I poured it all over him. Holy mackerel did he holler! When things like that happen it is best to just laugh and remember that you are only human and things happen.
 
my husband won't wear depends either. I begged him to wear them when we go out because bathrooms are so difficult. he would rather stay home.

I don't really blame him
 
With my hubby on the vent he has not left this house in a year. Don't blame him either. I don't know if he's waiting till the last moment but sometimes I'm too late with the urinal. I'll try tonight to keep it by me. What's a bed? Been on the sofa for the last 6 months. You're right Barbie - if we didn't laugh - we'd cry. Rather laugh! Welcome to the party! Glad to have more party on down girls to join.
 
You could try condom drainage, It is a condom with a short connector tube on the end that attaches to a catheter bag. It is held on with a short wrap at the top, and we use it the hospital with some success. So far my husband uses the bottle while in the sling as I put him to bed and first thing in the morning. He wakes me very occasionally to use it in the night, but I have a pad under him for accidents, and like Barbie's husband he wears only a T-shirt at night. My husband refuses anything to drink after 7PM but he doesn't want to pee in the night.
 
Did you say condom. I had to laugh at that one. He didn't use them when he was a young man I don't think he will agree to that. He doesn't wear anything underneath- just a hospital gown. I'm going to have to work something out. Thanks for that, I needed something to laugh about after last night. I know that was not your intent, I was just thinking about back in the day..........we've been married 43 years so that was waaaaaay back in the day. I'm started to really enjoy this party.
 
My Barney is rapidly turning into a sexual deviate. Well come to think of it he always has leaned in that direction. I am thinking he would probably love the condom thing?
Gosh this party is not only educational, it is informative!
So grateful you all could make it.
Hugs
Linda
 
The condom catheter is far better than starting down the regular catheter track.

My PALS got me to purchase a urinal about 2 weeks ago, and it's a non-spill one, that could be worth looking into. Of course my PALS hasn't used it yet and it will have to be me holding it for him as his hands definitely won't manage.

I think we can just call this a revolving door party eh? Waltz on in any time for a bit of party relief then waltz back to the battle ...

My pity call this morning is I'm starting to get a constant dull ache in my lower back. My PALS wants to do as much as he can himself, which means in reality I have to do a lot of work to get him up and down, through rooms and and and ... we are trying to slowly get him to accept the help from others, but he really wants me to do everything. Of course most of what I do is a 2 person job when paid help starts. He doesn't understand that this means I'm doing all the heavy stuff alone, let alone the time it takes. I understand his side of it completely, which is why I am getting an aching back and going mad trying to be everything!

OK back to the fray ...
 
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