Advice From the World's Worst Caregiver

Hey, I'm not good at the care giving thing, but here's what I've learned:

1) It's okay to be scared. I mean seriously, I've done things that should be reserved for trained medical professionals -- the operative word being "trained". I don't have any training. I should be scared. You should be scared.

2) On some days you're going to get pissed off. That's okay too. Humans sometimes get pissed off. I'm human. You're human too. Right? Right.

3) On some days you may experience a combo of bone tired + fear + anger = border line temporary insanity. Again, as long as you don't physically hurt the person you're caring for it's all good.

4) The love you have for the person you're caring for is your anchor. And God's standing by too, like a body guard, or a bouncer. HE won't let me (or you) deal by yourself. The power of prayer is incredible. I use it all the time. Try it. Can't hurt.

That's about it. Hey, I'll be all right. You'll be all right. We'll get through this together.

Christmas Day!

I can hear Dad's voice (loudly) from downstairs. He's talking to Debbie about the economy and unemployment. Only 2-3 months ago we didn't even know if he would be here to see this day. He could barely walk on his own, he was plagued with horrible hiccups -- that we were told was a sign of his kidneys and other major organs shutting down and that it wasn't going to get any better -- that hospice should be called in. We've been blessed...I know that. I baked the ham Jean bought, made some mac and cheese and some good ole Southern greens that I have to admit were pretty darn good. I bought some inexpensive frames -- I'm into collecting picture frames that tell a story -- inserted some pictures that may not be familiar to everyone else and gave them as gifts. It was fun...for me anyway. There may have been mumblings about Christmas humbug or the weather...or loud obnoxious chatter and gregarious laughter brought on by too much cinnamon whiskey (yum), but all in all I thought it was a good day...more memories we may not have learned to appreciate fully until we're looking back on them through a stilled shot of events that, as soon as tomorrow, will be our past. Isn't that usually how it goes? Dad was pretty mellow...he ate some greens, ham and the cheesecake Vickie brought for desert, then sat in the living room listening to oldies music on the television.

A downside to the day came when I was perusing Face book and noted a comment from a relative in NY that I've never met, that Hack, mom's step father, had passed away on Christmas Eve. He was 91. I never met him, but it was like another piece of my mom slipping away. Life is so frickin' fragile -- and I still don't think we truly get that otherwise we'd omit the pettiness in our relationships.

Anyways, enough of the thought provoking crap. Bottom line, I'm grateful 10,000 times over that Dad is still with us...another Christmas, and I pray 2011 will be as kind.

God, thank you for this day!

Day Before Christmas Eve

It's really difficult getting into the merry season of Christmas. Tony got dad a tree, it's absolutely perfect. I love it. I decorated it with all the bulbs I had to make it special, and I succeeded. Tomorrow we'll put all the presents under the tree, pull out our mixers and booze and get ridiculously festive. That'll be fun. The alcohol will numb us up a bit so we can forget for one brief moment -- 'cause that's all we get -- that two very special people in our lives are missing from our family; Kenny and mom. God I miss them every single day; not one day goes by they are not in my thoughts. But we keep trying to move on like we're encouraged to do. I just wish I knew what I was moving on to. Really, I just don't know. Well, I've got some things to do tomorrow to prepare for the big day. Ciao.

Pain In The Ass!

Okay, first I need to get this out of the way, I love Dad, I really, really do. BUT, he's giving my last nerve a complete aerobic workout. I need to vent.

A lot's happened in the last couple of days sense Dad's meltdown. For starters, Britney reported Dad's outburst to Dr. Jin, his primary care doctor, and docs nurse called to schedule an appointment for the next day within about two hours of the incident in question. Jean drove him and muscled (or mosy'd) her way into the doctor's office along side Dad. I'm surprised he didn't toss her out and close the door in her face. I know he wishes he had now. You see, he's furious with Jean because she told the good doctor that she was concerned about his driving. Dr. Jin responded that he'd told Dad he couldn't drive until he advised otherwise. Well, in Dad's mind Jean was instrumental in keeping him from driving and he's royally pissed. He is of course, completely overlooking the part when the doctor said they had the driving discussion before, and the fact that HE SHOULDN'T BE DOING IT. Jean called me at work to warn me about the day's events. The minute I walked in the front door he started, well, after I gave my opener that is, "Hey Dad." It was like flicking a switch, "Well, Jean went and got my doctor to say I can't drive." Words seemed to spur Dad on so I didn't give him any. Silence. After an awkward moment of no talking I asked, "Is there any medication I need to pick up at Walgreens?" Safe question, which I knew would have an affirmative response since I'd ordered refills the night before. He continued to ramble on about Jean and the fact that she told the doctor she'd take him to every appointment and that she won't be able to do that because she has to look for a job and if at any time she can't take him he just won't go to his doctor appointment. This was starting to sound pretty similar to the incident this summer after I called his doctor to discuss his driving, his threats to not go to another doctor's appointment or take any more medication if his doctor even suggested he could no longer drive. Dad's specialized brand of emotional blackmail. Aaaaah! I could feel my blood pressure rising. Deep cleansing breaths in, negative energy out. So I said, "Anytime Jean can't take you, I will." He mumbled something that sounded suspiciously disbelieving. Still putting forth serious effort to be really, really calm, I said. "We're just trying to help." His next comment was very clear and distinct. "Yeah, well your help is more hurting than anything else." And ho hum, I lost the temper I've prided myself on keeping a tight reign on for years, "WHAT DO YOU EXPECT US TO DO?!" In an effort to call forth a calm, zen state I prayed, but too late. I'd stepped over the edge, and Dad was staring at me like I'd lost my mind. "WE'VE BEEN DOING EVERYTHING WE CAN TO HELP YOU!!" Oh the look on his face, like he wasn't sure if he should take the time to grab his cane before making a run for the door or pick up the phone and call the cops.

"Well," he started, "I wasn't talking about you." Really, I couldn't get that from the "yous and yours" references. "You" and "your" typically refers to the person standing in front of you. Dad always backtracks when he realizes he's gone too far. And his favorite line is, "I was just joking. Geez, why are you so sensitive? Just like Jean." Really good 'piss a person off' question.

Finally the zen state of mind kicked in and I was able to bring sanity home. Sort of. "So," I took a deep calming breath. "Do you want me to pick up your medications?" In the same tone I'd use to say, 'Would you like some hot cocoa or cookies?' I'm sure the abrupt about face unnerved him even more, because he was speechless, and his eyes were undoubtedly drawn to the neon sign on my forehead blinking, SNAPPED!

In a discussion with Tony later (and Tamara and Jean, and Vickie and probably the mailman and I'd think Doug, his next door neighbor, oh and his brothers Ernie and Charlie), Dad did a recounting of our attempt at communicating (in his own special way, of course) and said, "She yelled at me, for no reason at all. I'll never forgive her for that." I can imagine him pausing for the dramatic effect before saying, "I've never seen that look in her eyes before." Did he ever even meet me? My Dad has no idea who I am. The reason why he's never seen "that look" in my eyes before is because I work really hard to be respectful regardless to the thoughtless and mean comments he makes on occasion. And you wonder why I don't want to give up my personal space, even if it's only for the weekends, my own Shangri-la, and move in with him? Pah-lease.

I lost my temper which puts me in a funk; rule no. 1 in the "Care giving Guidebook": Do not yell at the patient. To be honest, I don't know if that book exist, but if it does, I bet that particular rule has a chapter dedicated to it. And now, I guess you have a better idea of where I came up with my blog title, The World's Worst Caregiver. Aaaarg! I wonder if there are any suggestions in "the book" on how to continue with the caring and the giving when sometimes you feel as if you're in an emotionally abusive relationship. I don't like feeling like that. It's just not good for anybody.

God, please give me an abundance of love and patience. I'm going back tonight.

All The Anger and Frustration and Pain

I'm very glad the universe, for the most part, only dribbles on us from time to time, instead of hitting us with a dirge. Today we had a dribble, a major one. Dad fired Britney. According to Jean, there was a whole lotta yelling going on. The reason? Well, Britney made some "suggestions" about Dad's diet. On occasion she'd leave notes for him. Dad's convinced these "notes" were intended for me too. She suggested nonfat milk instead of whole or 2%, whole wheat bread instead of white, and egg whites instead of with the yoke yada yada. Well, lately Dad's been gleefully spouting, as soon as I walk in the front door, about Britney's "suggestions". "Britney's trying to change every ones diet in the household," he'd say chuckling. I knew this was Dad's very own interpretation of what was said but hey...most of the time we just nod and go on about our business. Anyway, so today Britney brought up the nonfat vs 2% persuasion and Dad responded something like this, "Angie's not going to like what you're saying." I'm not sure why my name was brought into the discussion. "She likes her 2% milk," he told her. "Well," Britney explained, "Mr. Beck, my concern is with you, not Angie." This was the catalyst for the total and complete meltdown, which was apparently a display of temperament very unlike Dad. Mind you I wasn't there but according to Jean his blood pressure soared to 180; he spoke about how everyone is trying to control his life, how tired he is of people getting in his business, how he's going to eat whatever he chooses to eat, how he doesn't want her (Britney) to come back and the fact that Angie (me) arranges people (his children and grandchildren) to "babysit" him on the weekend, and the fact that Angie (me) goes home on the weekend just to watch Tony's big screen television, which doesn't make sense because she (still me) can move in with him and not pay rent, and that if everybody keeps bothering him he'll kick everybody out of his home, including Angie.

I need to clarify the aforementioned "spouting" didn't come out exactly as I've written today, and only some of it represents an accurate accounting, however these are some of Dad's usual complaints that have been heard by all on a daily basis, except the part about me moving in. Dad doesn't talk to me about that anymore because I've made it pretty clear I don't want to do that. At 52 years I like having my things around me, and staying at his home Monday through Friday morning is all I can emotionally handle right now. However, he continues to belabor the issue with anyone who walks through the front door.

Bottom line is Dad's blood pressure hit about 180 and the nurse is very concerned about couple of things; Dad's high a blood pressure and his extreme depression, which he admitted to. She said that if he called her by the end of the day she wouldn't put through the discharge papers. He didn't call her.

I recall as a youngster playing in the snow on a homemade toboggan--a trash can lid or a nice sturdy piece of cardboard; we'd drag it to the top of a big hill and go barrelling down across the packed snow screaming at the top of our lungs. It was exhilarating. I feel like Dad's on the toboggan at the top of Mt. Fujiyama and he's barrelling down the sides of the mountain in the snow completely out of control. And frantic and terrified and scared, we're all running, stumbling, falling down the mountain trying to grab hold in order to slow it down, to catch him before he hits the bottom. To save him.

Everything seems that out of our control, and not being able to "save" him is what keeps me up at night. And we're trying, really hard. I can't even begin to imagine how Dad feels. He is the one, after all, trying to steer something that continues to be unequivocally out of his control, and in God's hands.

Help him, God, please.