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Grumpy'sWife

Distinguished member
Joined
Aug 18, 2014
Messages
153
Reason
Lost a loved one
Diagnosis
07/2014
Country
US
State
Ohio
City
Southern
Grumpy has been in the hospital for the last 6 days. Transferred us from the VA at homes to here in Cleveland. They seem very knowledgeable about ALS and have 3 other ALS patients here now as well. I haven't gotten much sleep as he isn't sleeping well and prefers me to the aides doing his care. He has a bipap now and getting used to it has been a very trying time. His peg tube goes in day after tomorrow because his FVC was extremely low. They said now or probably not at all.
How the hell do we get off this train? It feels like we are going to run out of track soon. We went from being so.positive, doing well with transfers and breathing was ok to this. He can't stand any longer, can't move his toes and his FVC is a 27. I hate this damn disease!
Thank you for letting me vent, even at 3:30 in the morning...
 
oh, I hear you!

Rapid progression means you just never seem to get a chance to work out 'where' you are and how to cope because when you think you do it just moves on again. I hate this monster too.

I'm so glad the hospital seem to know what they are doing at least, but it's exhausting for a CALS being in hospital as you never really rest properly for a minute. Please try to get out for a walk or something each day, something that appeals to you.

Good that the peg is going in and the bipap is being sorted out. Getting it all done now at least means you are having it done where they know what they are doing and you can start trying to adjust again to the new situation.

I do so understand, every single day Chris lost something, it never let up no matter what we did. Vent away, there is nothing as cruel as being helpless like this.
 
I'm so sorry you are having a tough time. It is hard having to deal with all the changes. I hope the next few days go smoothly.
 
Grumpys wife this is the crazy train we are on too. If we go one week that is good it is a surprise and rare. All I can say is take it day by day and hour by hour. Try as much as you can to give yourself a break. One day I hid in the bathroom for 20 minutes because I just needed a few minutes. Try to eat well. That will help. Hugs and prayers for you.
 
Gooseberry, smiling as I picture you hiding in the bathroom! You need to find a more uplifting spot for your retreat! Lol
We surely all have those days of wanting to run away and hide!
 
Cheerleader I had to be close by but just felt.like I.was going to lose it! It helped but a nice garden would have been better:)
 
Glad to hear it was out of necessity rather than choice! Smell the roses, my dear!
 
Aww, I am so sorry! I am right there with you sister, as we just got out of hospital after 4 days. it was Hell! I too had to be constant caregiving, as the aides and nurses were willing to try but they just were not equipped to deal with the ins and outs of ALS. it is so so tough and I wish I had some good advice...

try to get naps and relax as much as possible. ask the nurse or tech to do their charts in his room while you go have dinner in the cafeteria. know that we are there with you in spirit. I am with gooseberry--I also went in the bathroom and cried in the shower one day (it wasn't on I just needed the private little space). Be sure and take some nice hot showers while you are at it.

hugs to you
 
No question, this is the longest road, no red lights and only one exit.
You and Grumpy are traveling it with all the courage and compassion you can have for each other, I am sure.
You will be home soon and learning by doing, tips 'n' tricks for the new gadgets. Let us know how we can help once you start adding to your question list.
 
Our PALS might not say it much, but I just know somewhere in the misery they appreciate all we do (or did). Thank God they have you.
 
Thanks everyone. Sometimes just knowing you all understand what we are going through makes a huge difference! Today an aide popped her head in the door and saw he was asleep, she motioned for me and said I will sit with him, go get something to eat and relax for a minute. She was more than nice and when I got back forty minutes later they were chatting about football. He even said she could take him to the bathroom! Very unusual for him.
Gooseberry the bathroom has been a favorite hiding place since the kids were little. The shower is my place to cry and although he knows he never says a word to me about it.
Barbie, hope your PALS is glad to be back home and that you are getting a little more rest as well!
I do have to end on a positive note, my Grump has a wonderful sense of humor. Upon arriving here, they brought him to his room and put him in bed. The nurse breezes in the room and says "Hello sir, first thing we need to do is get undressed, you need to be naked so I can check your skin thoroughly." He looks at me, looks back at her and says with a smile "ok but I don't get naked for any woman unless I at least know their name."
We both cracked up, she looked at both of us like we were crazy! Next time I bet she introduces herself first!
Thank you all again!
~Kaye
 
how soon do they think he will be getting out? what is he in for?

gosh Kaye, it sounds like we are talking about convicts! LOL
 
Kaye, the roller coaster from hell is what I called it. I know what you are going thru - a nightmare. I use to go in the shower and called it my shower of tears. It seems like there are no breaks. I remember when Joe was iN the hospital one time and I was near exhaustion, a young doctor gave me the best piece of advise. If you don't take care of YOU - you won't be able to take care of him.....Try and remember that and take a nap when he takes one. Go for a walk or get a bite to eat whenever someone offers to sit with your pals. Thinking of you....



Debbie
 
Barbie, he had a fall. We went from standing transfers to being unable to stand. After the fall within two days I noticed a huge change in his breathing as well. We had no hospital bed and no lift. In the beginning they admitted him for respite care so I could get equipment in place but then they too became concerned with his breathing. Then they wanted him to see the ALS team data different VA here in Ohio. So we moved here, they are putting in his peg today, hopefully home tomorrow since equipment is now in place! And it does sound like we are talking about convicts!
Debbie, I have been trying to rest and to eat. They brought me in a bed, a recliner and a regular chair to try to make me more comfortable. Maybe it's just luck but we have been blessed by excellent staff at both of the VA hospitals we have been in. We have been approved for 4 hours of home health care a day once we are home so although it will be hard letting someone else care for him I know that it will benefit us both in the long term.
Thank you for caring, you have all become so important in such a short amount of time.
~Kaye
 
It's awful how quickly things can turn on a PALS.

I'm so glad that you have received such good treatment and help and now things are in place for both equipment and assistance. Well done you!

Thinking of you both tomorrow with the peg procedure.
 
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