We’re now three days in to March of 2012 and things are changing daily here, so I’m going to just sum up the major changes and get back to work. It’s been a long week. I’m at the end of my rope and really, I’m making big adjustments.
For those of you who don’t know, I’ve been taking care of my father for nearly 20 years. I live at home with my folks, my mom stays sane with a job that takes her all over the region, I work at home and they live downstairs so I’m here to keep dad in check.
In the late 1980s dad was classified as 100% disabled by the Veteran’s Administration. That means he could never work again and his health care coverage was pretty much fully covered and free as long as he stayed within the military system.
He has a host of physical and mental problems. One of the biggest problems is that he tends to fake illnesses in order to get attention and can get himself in and out of hospitals at will because the coverage is free. Sometimes he’s not even aware he’s doing it, but the elaborate extremes he goes to when he’s pulling off a scam are amazing. I’ve said it before and I’ll say it again, if he had applied himself to acting when he was young, he would probably be one of the greatest actors of our time. He just has a way to make you believe that things are real, that he’s really sick and that you should invest your time helping him.
The trouble is that after twenty years of directly caring for him I’ve seen it all. I’m jaded. My natural reaction is that he’s faking and there are certain steps he has to go through to prove that his conditions are real. Other folks in my family fall for his antics every time, often making diagnosis of their own to fit whatever story they want to tell at the moment, and it just makes things worse as it just inspires his bad behavior. It’s a symbiotic relationship. He gets the attention he wants from it.
About three months back he was in the hospital because he had been in charge of distributing his own medicine and he had screwed things up with dosage that it was causing real issues. It was always a bad choice to have dad in charge of this since he could “fudge” doses and take as much as he wanted but dad’s a big guy and no one wanted to get in a physical fight with him over medicine. We’d lose, hands down. They rebooted his medicines and he had an incident where his blood pressure spiked high enough that he landed in the intensive care unit. After a week or so they sent him home and my mom took his medicines under her direct control. She literally locked them up in a storage cabinet and hid the key from him so he could not have direct access to them.
Somewhere in January he began to demand that she stay home with him full time. He said his psychiatrist suggested a change in life and that my mom should quit all of her jobs to care for him. Mind you, the Veteran’s Administration provided him with a nurse’s aid 5 days a week for two to four hours at a time and I’m literally always here, but it wasn’t enough, he demanded that she quit everything and be with him all the time. She refused.
His actions immediately changed. He stopped watching the movies on our media center. He’d forget to do the fire. He’d forget to shave for days at a time. It was gradual at first but nothing that couldn’t be explained by severe depression or another game. We’ve been through this before, sadly, nothing new. By mid-February he wouldn’t eat unless you put the food in front of him and his memory was to the point where he’d forget simple things. For example, his dinner had chicken that needed warming up and potato and macaroni salads. I showed him what to do (take the chicken and put it on a paper towel and put it in the microwave), and he assured me he would do it so I went back upstairs. Two days later, mom found the entire plate in the microwave, partially melted. He had put everything in the microwave (chicken back on plate with salads), and just walked away.
His blood pressure also became an issue. It was dangerously low all the time and he’d “fall asleep” a lot. The nurse’s aid said it was a side effect of the low blood pressure. He was briefly hospitalized in January for it but the doctors at the local hospital weren’t concerned about it so it wasn’t a big deal to them, it was just another of his conditions to monitor.
Last week he started being obsessed with the bathroom. When he was in control of his own medicine, my father was notorious for using laxatives to get his system to go to the bathroom then anti-diarrheals to stop himself from going then more laxatives because he was worried that he wasn’t going. We’ve been to the hospital on two occasions because he had screwed up his system so badly that even enemas did not work to straighten things out. I’ll spare you the details but I’ve never seen a nurse so scared in her life after not one but two of them. Dad could spend 6 to 8 hours in the bathroom. There wasn’t really anything we could do about it and since he wasn’t harming anyone but himself, it wasn’t worth the fight.
This time though, he’d sit on the toilet for hours, just sitting there. Not doing anything, just sitting and staring blankly into space. Sometimes he’d be asleep there. It wasn’t normal behavior for him. When my mom or the nurse’s aid would try to get him out he would get aggressive and be right back in the bathroom a minute later. Last week I had to get involved. I had to use the tone of voice and unrelenting attitude of the one person he fears — his dead father — and take control of the situation. It was hard because having to be a hard ass isn’t who I am and really, none of us wants to see a parent in that state of undress on the toilet and have to be in control of their bathroom habits is not something that’s normal.
After three days of being up around the clock getting him in and out of the bathroom after 10 minutes at a time, mom had enough and did what she had to do to get someone to see him. None of his doctors would see him until his scheduled visits up until this point and when she finally found one that would listen he had her take my dad to the local emergency room for an initial diagnosis then turn him over to the Veteran’s Administration hospital two and a half hours away to figure out long term care for him.
They scanned his brain and the report that I got back (filtered through my mom) was that there were spots on his brain indicating dead tissue. These were apparently caused by the incident in December that landed him in intensive care. This would explain the loss of memory and the strange behavior. His blood pressure was still a mystery so the decision was made to put him in a local nursing home for “long term care.” We’ve got thirty days of payment from insurance and then the Veteran’s Administration is supposed to take over care from there (essentially paying for everything while keeping him local).
I worry though that it’s not real. We’ve been here before. He’s been in wards or homes before. He usually goes in with a semi-real problem and after thirty days he gets bored and comes home even if he’s not well. He knows the system enough and he knows how to get out and come home. After years of cons and games on his part, it’s hard to believe that it may be over. We’re all in shock and kind of out of it. My mom has been in a daze for a couple of days and she fell and broke her kneecap last night because she lost her footing on the front walk. I mean this is a big thing if it’s real, but if it’s not real, and he is sent home as he is now, then it’s going to be very bad for us all.
I also don’t know what I’d do with my freedom if he really is “gone.” Mom’s changing downstairs around. Our food bills have dramatically lowered without him here and it’s only been a week. Plus, since I’ve given up so much of my life and so many chances over the years that this is going to be a huge adjustment. I really don’t know what to do next other than wait out the 30 days of insured coverage and see what happens after that. I guess it’s all up to him now…
and that worries the hell out of me.
Jim