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Pandora

Distinguished member
Joined
Apr 30, 2011
Messages
130
Reason
Lost a loved one
Diagnosis
01/2011
Country
US
State
Texas
City
Crowley
Bran got out of the hospital, in awful pain yet again. Last night was horrid. I get him into bed and he was uncomfy all the time. Every 15 min he needed to be repositioned, or more covers or less covers, or turned over. No sleep, no rest. after 3 hours of this i just gave up. He pulled out his stint, and the dribbles begain. I am by myself at this point, and I can't move him alone. I can't do a hospital bed sheet change, he wont allow the movements it takes. I dont want to leave him in a wet bed, but he wont let me do it. I tried to make him, but he is 300 lbs.. if he dosent want to move.. he wont. I have put chucks all around him and did the things he would let me do, he wants to go to his chair, but I cant do it alone. I feel helpless, hopeless. Found out he has two discs in his back that are messed up, and that may be causing pain, and some mobilty issues. But they released him without addressing this. I'm at a loss for words, i sit here and type while he groans, and growls, and moans and there is nothing I can do. Is this the start of the end? I am at a loss. I cant continue to move him around every 10 min, I will fall apart and then where will we be? I just had to get it out.
 
He's still septic and they can't get his kidney stone out? What about pain meds? Anything to knock him out? I hope they can help you out with home health care for this situation, til it is resolved. Ask the doc about it. You never know.

My thoughts are with you. Hang in there!
 
Thoughts and prayers are with you Dear. Wish we could help. xoxo!
 
Do you have a lift? If you do, get someone to show you how to move him by yourself. It can be done - easily. I do it every day. See if someone from the ALSA can come and give you some lessons on equipment that will make your life easier! ou shouldn't have to go through this!
 
Don't you feel sometimes that you are having to battle them just to make sure they get what is best for them? Know that is how I feel with my husband at times. Hope it helps to know that I can relate to your frustrations. Most of all, hope you find a way to get some help. Any possibility of home health or hospice care? Around my house that is another source of frustration - the lack of support without having to give away your life savings to provide care for them. GOOD LUCK!
Janis
 
Pandora I understand all to well how frustrated you both are. But you are right if you are tired out and get injured you won't be able to look after him. Do you have any one who can spare you to get some sleep for a night? The suggestions about mechanical lifts etc... in the previous messages are good ones. I found out the hard way when it came to equipment all I had to do was ask the right people. Looked all over to buy a hospital bed in this area only to discover I could borrow one from home care. Take care of yourself while taking care of Bran.
Prayers are with you.
Abbi
 
Pandora,

ALS Guardian Angels will help you. Please call me at 949-233-3045.

Stu
 
First of all... you are doing a wonderful job. I know you think how much more can I take. I was at that point not so long ago.
This to me is the most horrid disease, its a life sucking piece of Sh*t ( sorry for the language). I have seen with my own eyes the way is rips people apart. I felt as if I also had the disease with the ability to move.
I know what is like to have to move them. they try to tell you but cant verbally tell you. to help with that we made up our own way to communicate with each other. I smile these days thinking back.

try not to take it personally... make time for yourself... arrange for a good and reliable support network.

Contact me at [email protected]

ps. are you able to tell me that country you live in plz

Elizabeth
 
I am so sorry for what you are going through, and glad that you have been in touch with Stu. Hope things get better for you soon :( Until then, hang in there!
 
I made my parents move in with me because it was getting diffcult to move dad, and to many night trips to help mom get him up. Now he can't move anything and insurance doesn't help with anything. Mom bought a lift that we can diesemble and move ourselves. It has a sling that we put behind him and allows me or mom to lift him and change bed linens or chucks under him and also put him in his wheel chair. At first we used it to get him from wheel chair to bathtub so we could bath him, but now that he is on vent we just leave it over the bed. I can understand your frustration on the getting up and down. I did it 3 days in hospital with dad and can't imagine because mom does it every night and doesn't get a full nights sleep. Do you have people to give you breaks, because you have to take care of you too.
 
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