designdiva
Active member
- Joined
- May 30, 2013
- Messages
- 43
- Reason
- CALS
- Diagnosis
- 06/2013
- Country
- US
- State
- Indiana
- City
- Indianapolis
Pretty new here, I read on occasion but never post. My sister, husband and myself have been caring for my stepfather for about 7 months now, he is rapidly declining and very stubborn about everything and seeing major repercussions from it this weekend. The nurses and therapists have been telling him for months to drink more water and less soda to thin out his mucus and help with bowel movements, he has been telling us he cannot swallow it and would simply go all day without drinking it if that was all we gave him. They have also been telling him to take laxatives and stool softners, which he also refuses most days. Friday he was so constipated he sat on the toilet for 9 hours, took 4 tablespoons of milk of magnesium and 4 stool softners, *magically* he was suddenly able to drink down 3 glasses of water, still could not go so I had to give him 2 enimas which resulted in him going to the bathroom (both urine and feces) all over everthing for 36 hours straight. We ended up doing 3 loads of laundry to clean all the soiled clothes and linens and I am pretty sure I took out at least 2 large trash bags full of disposable goods. Needless to say no one got much sleep for that 36 hours. The therapists have been trying to talk him into getting a hospital bed to help with getting him up and down and sitting up, he has refused repeatedly, tonight he has been having issues with overproduction of saliva leading to gagging and also getting mucus stuck in his throat that he is unable to clear and I have not slept in 24 hours at this point and got little sleep the night before and he just keeps yelling "help me, help me" because he wants to be sat up in bed to spit and try to clear his throat, which he could do himself if he had a hospital bed. I am so tired and frustrated that I'm about to put my head through a wall and he just keeps on. He has barely ate at all in 2 days and has only taken half of his medication that he should have taken, once again he has difficulties swallowing but will not let us crush it up and prefers to choke and spit chocolate milk all over himself and the carpet and then cry about it everyday I suppose. We are all at the end of our wits with him, even though he has 3 of his own children I only get help from one for a few hours a week if I'm lucky and then he will not allow anyone but my sister or myself to help him with anything, my husband sat with him a couple hours this week so I could take a nap and checked on him multiple times and he never asked for anything but the minute I woke up he had me running around like a crazy person getting him stuff and while his daughter was here for 5 hours last week she offered him food repeatedly to which he declined and the minute she walked out the door he tells me "I'm hungry", I called her over on Friday while I was having a melt down to help him so I could step outside and regroup and he kept asking for me over and over, when she told him that she was not going to go get me and asked what did he want, he simply wanted to lay down in bed (which he was already sitting in, grrrrr). I have been trying depsperately to apply for Medicaid and have been denied twice for resources I was unaware of, though they aren't much they put him over resource limit and every time we reach the end of a month and I think I will be able to reapply he gets some amount of money (tax check, 401K cash out, disability back pay, etc.) that isn't enough to cover all his bills but the time it takes people to cash the checks I send puts us stuck waiting out another month to be able to reapply. He was finally approved for disability a week and a half ago, which after getting the runaround from the social security office, I am told should come with automatic medicare enrollment but so far I have received no documentation that his disability was approved and no medicare cards in the mail, ss office just keeps telling me I'll get something in the mail... we are trying to get him into a nursing home or at the very least get some regular in home care to relieve us a bit but my hands are tied. Does anyone else have a PALS who seems to just be trying on purpose to be as difficult as humanly possible? I wake up in a fairly good mood everyday and ready to try again but by the end of everyday I just want to scream and tear my hair out, I'm not sure how to deal with him anymore, he has been called on some of his BS but it doesn't seem to make any difference and I feel neglectful ignoring his cries for help even if it ends up being something stupid like to retrieve a dropped remote that he doesn't even need but simply wants it put back on the table meanwhile screaming like he's dying to get my attention from the other end of the house and interrupting what little chance I have of getting any housekeeping done around here.