cant tke no more

[cukita99]

caretakers i understand its hard on u but try not treat us like idiots especially the ones getting paid. if we say something isn't right dont tells us it is just fix it. :-(

 

[caldona]

You know what gets me is everyone thinks you shouldn't worry about the door being closed or maybe stand right beside you while your on the pot the other day I ask the girl if she wanted me to stand beside her while she crap. It burns my butt when they act like I shouldn't care, its my body that has the problem not my mind I wish people understood that.

 

[Willow]

Have to agree but I don't honestly know how to handle the situations.
I was in a neuro examine and not being able to fully "groom certain areas" when they examined my legs, although I still had underwear on, which probably made it worse. The doc said....maybe we should just cover this! Wow...why didn't you just put an arrow there!...why didn't you just cover, ignore.....accept and/or help? Thanks doc!

 

[BeckyW]

That's awfull and rude!

 

[KrisS]

You should be made to feel you have as much dignity as possible. Unless there is real risk of injury to you, there is no reason you can't have some privacy when needed. If your caregiver doesn't get that, I hope you can convey it to them. My PALS/FTD needs privacy to use the restroom, and I always do my best to accomodate him. If your caregiver is hired, fire them and get someone more compassionate. If your caregiver is a loved one, do your best to convey how you feel and ask for love and support, instead of humiliation. I wish you much luck.
Kris

 

[cervus]

Isn't this the caregiver that was disrespectful when she first started working with you? Sounds like she needs another talking to! If she doesn't listen, she shouldn't be taking care of you. You should be able to feel completely comfortable with any caregiver. Yasmin.

 

[cukita99]

cervus, no its her cover up for days off. she thinks she knows better then me. my son told her not to treat me like im stupid n to just fix the problem. thts it for her.

 

[cervus]

Well good for your son. It should all be better than this. Take care and yes, have a good advocate. Yasmin.

 

[mysisterskeeper]

You know what gets me is everyone thinks you shouldn't worry about the door being closed or maybe stand right beside you while your on the pot the other day I ask the girl if she wanted me to stand beside her while she crap. It burns my butt when they act like I shouldn't care, its my body that has the problem not my mind I wish people understood that.

when we set my sister on the bedside commode after placing a pillow beneath her feet so that she doesn't have leg spasms (her feet don't sit flat on the floor and since they dangle they often spasm), we put the other pillows around so she can sit up. This is her 12th yr of ALS and she has practically no movement or head control so we use a lot of pillows, but anyway, the front room of the house is separated from the living room by curtains and we draw them. If I am home alone with her then I come back and check on her every 1 minutes as it usually takes 45 minutes or so for gravity to work after the suppository. If a nurse is on shift, they sit in the living room and check on her every 15 minutes. Oh and I always light an incense for her. Her dignity is very important.

 

[mysisterskeeper]

i meant i check every 15 minutes like the nurse does. It really helps if you have a family member who can advocate on your behalf to your staff and others

 

[cukita99]

im so tired n feel like giving up. i dont blieve in suicide so wht else can i do.

 

[ottawa girl]

im so tired n feel like giving up. i dont blieve in suicide so wht else can i do.

Please, don't give up. Your son needs you. We on this forum need you here too. I wish I lived closer- we could visit. Hang in Lupe - We're all pulling for you.

 

[caldona]

im so tired n feel like giving up. i dont blieve in suicide so wht else can i do.

I was diagnosed 1-07 and I know how you feel in fact I have told my family if I choke and don't come out of it don't feel bad because then it would be over but you know the next day I am sure glad I am still around for another day. All we can do is hang around until God gets ready for us. I heard a preacher say that God picks a bouquet like we do. I guess it's not our time to be picked

 

[SMP51]

im so tired n feel like giving up. i dont blieve in suicide so wht else can i do.

I am not in your place, my husband is. All I can tell you is he handles it a day at a time, not looking much past the moment at hand.

 

[ottawa girl]

Lupe,

Hope you are doing better today!