Great Grand Dad

Michael, Tamara, Verdell and Megan call him Daddy, Debbie and Tony call him Pops; he's great granddad to Desiree, although she used to call him Daddy until her father got bent and asked her not to. He was Ken to mom and sometimes other names I'm sure when he made her mad, asshole comes to mind mumbled under her breath on occasion. He's many things to many people. Jean, Joan, Vickie, Gary, Me, Kenny, Jimmy and Lisa called him Dadi when we were kids - draw out the "a" real country-like and make it lo00ng. Or maybe it was just the 4 youngest and Vickie that called him that. I think we got it from watching Shirley Temple on Sundays. I'm not sure. Now, I just call him Dad. He was practically super man when I was in high school. Could leap tall buildings and all that. Knew everything about anything, one of the smartest people I knew. I'd tell everybody at school all proud, "My dad works at Fred Meyer, manager of home improvement department. If you need anything at all go to him. He's the only one there who really understands customer service." I think I heard dad say that a time or two. And off they'd go, then report back to me to say I was right. Duh. My dad, they'd say, was a resource of valuable information about anything related to building stuff. Kind of funny when you think about it because although dad could direct a hapless customer down a certain isle for a certain something for a building project, or give you advice on a specific product the store carried, he wasn't much for putting stuff together himself, well...not without a project disability of some sort anyway. I remember certain aspects of the house I grew up in on 51st Avenue East. Let's see, if you turned on the heater in the bathroom it would turn on the heat in my room. The hot water turned on the cold and cold...well hot of course. The house had some serious electrical disorders. It later, many years later, burned to the ground. I seem to recall a rumor about an electrical fire that started in the walls. Not a big surprise. Dad, mom and Allstate had the house rebuilt. Although mom tried really hard to keep him from fixing anything that involved electrical wires and tools, some things were just meant to be. In the newer home, if you talk too loud you can set the door bell off. And we're all rather loud so...well, you know.

My dad epitomizes the skill and art of customer service because he's a people person. This is why he was such a good manager. His world is everything it needs to be when he's socializing with people. You know? Now that mom's gone he spends way too much time by himself and the natural urge to socialize gets all jammed up inside. Not good for a social butterfly. So when he gets a call or his children stop by, this really genuine talker dad of mine just talks...talks about the war, or the old days, or Jennifer Anniston and his opinion on why Brad left her for Angelina Joli, or free range chicken...just mentioning free range will start him down the road to the conversation he had with Jean and how she thinks the chicken at Safeway is free range which is ridiculous, and how when he was a kid that's all they had and how really good it was. Yep, Dad's a talker, as am I and the rest of the family, except Lisa that is. She's a quiet one, the only quiet one in the family.

I tried to come up with the one word, a nice one, to describe my dad and it made me think of a conversation I had one day with my granddaughter. I was sharing custody of her for a weekend with the other grandparents and was driving her back across town after a short visit with dad. She was sitting in the back in her car seat just chatting away about him. She was referring to him as him. Him said this and him said that. Our conversation went something like this, "Diamond, honey, you can call him great granddad." With a puzzled look, she looked back at me with all her cuteness, "Why?" she asked. "Well," I tried to explain patiently being the good Noni that I am, "because he's your dad's granddad, and your great granddad." Again the furrowing of her baby brows. "Why?" she asked. After going around and around and trying to explain the hierarchy of first being a dad, a granddad and then becoming a great granddad, there was silence in the back seat of the car as her little mind struggled to process the information, then she said, "I mean why's he great?" Why's he great? Oh. She was only three at the time. My Diamond is the smartest granddaughter ever. I tell her that all the time. I had to chuckle. Why's he great? "Well, because he's my dad," I told her laughing.

And over the past few weeks, with the frustrations and the moments of feeling completely undone by sadness and a fear that sometimes crushes my heart inside my chest, I think about all that. He's the only Dad I have. And that's mighty great.

Yesterday was a really bad day for my proud and really stubborn father. Today was good I think. No mishaps with the colostomy bag. My uncle made him a really good dinner. He ate it. That's good.

God, please just help him get better. I don't want him to suffer, and I don't want him to ever stop talking. Amen.

Longest Night

I must be the worst caregiver there is. It sucks for Dad that I'm what he gets as a primary caregiver. I don't know what I'm doing, I'm angry most of the time, impatient, frustrated, irritable and so unbelievably frustrated. Last night never ended. It started the minute I walked in the door after work. Dad greets me in his undergarment, holding his hand against his stoma. I hate it when he walks around like that. The wafer and bag had just fallen off (AGAIN!). Debbie replaced it just Sunday. The air was scented with feces, and my somewhat pleasant mood tanked. It seemed to my weary eyes that everything he touched had feces smeared on it, the back door, the washing machine, bathroom sink, waste basket filled with soiled paper towels...it was horrible. I tried to hide my feelings but I'm not good at that. My face screwed up like an old prune as I walked into the living room for recon duty. I cut the appropriate sized hole in the middle of the wafer, glued it to his stomach, and attached a new bag. Having to replace the wafer was not what had me undone...but seeing my dad in his depends, not to mention, all the hot spots around the house where he marked his territory, completely messes with my head. I guess he figures anyone who has emptied his bag and checked stitches in places where the sun don't shine...well, what else is there to be shy about? He also answers the door in his under garment for the nurse when she visits once a week. Delightful. Simple fact is, he's my dad and now that he's up and about is it too much to ask that he clean up behind himself when he exits the bathroom, and for Pete's sake conceal all those unmentionables behind the robe! That's what the belt is for. Is it too much to ask? After I cleaned him up and the environment around him I went upstairs. Sleep didn't come easy...I couldn't stop thinking about everything, my Dad, my job, my dad, losing my job, the lousy job I was doing helping my dad...with all that on my mind I must have dosed. What woke me up at around midnight was my dad bellowing. The wafer and bag had fallen off again. SHIT! Again, I cleaned him up, and everything else (don't ask!), went to the store to buy some stool softener and cookies, yeah, he asked for the marshmellow ones coated in chocolate, then tried to go back to sleep. I woke up at 6:00 a.m. So much for getting to work at 6:00 a.m. The bellowing again. I go into the living room and he's sitting in his underwear holding his hand against his stomach. Guess what happened? Yep, the whole thing fell off while he slept. The entire house smells like stool. Even after cleaning it up I can still smell it in my nose hairs.

Funny, Debbie and I were so proud of our efforts to get him back on his feet the weeks following his surgery. We diligently followed the instructions from the nurses, emptied the colostopy bags, kept the incision clean, helped him get around the house when he could barely walk...and seeing him improve lifted our spirits. We'd been able to keep him in his home like he wanted. Very naive.

I must sound like a really uncaring and unsympathetic daughter. I'm not, really I'm not...which is the point. I love my Dad. His problem with cleanliness existed before the surgery. Adding the issues with the colostopy bag just took it up a step.

Dad was going to cancel his chemo today, however after talking to his nurse, Brenda, she explained what was going on. Something about his stoma being inverted, which is why it keeps backing up, why it's not working properly, and why it's now bleeding. But the good part is they know how to fix it. She suggested that he keep his chemo appointment, then tonight at 5:30 p.m. he has another appointment to keep with Dr. Klatt, the guy who stole his rectum in the first place and replaced it with that damn stoma. The way I see it, Klatt owes dad big time. The thing ain't working, it's broke and needs to be fixed free of charge.

I'm sick to death of playing amateur nurse because I don't know what the hell I'm doing. This is the beginning of a scary story about cancer and diabetes and heart disease that will end badly. I know that. And I'm just scared.

Flies

Well, I'm at the end of my weekend and back at Dad's. Oh so sweet a minute of time it was in my own dwelling, flies and all. About the flies...I spent all last night killing these big fat flies, flies so fat and so slow all I had to do was snap a towel and they dropped. But as soon as I got one, another showed up to take it's place. We did that dance until around 11:00 pm. I would swat, kill and toss in the toilet, then return to the kitchen where they seem to congregate and again, swat, kill and toss, swat, kill and toss. I couldn't figure out for the life of me where they were coming from. My sister, aka landlord asked her ex husband whom she divorced a couple of months ago, and she said that he said the flies had been hibernating in my house as babies and were just now coming of age. How the heck does he know that's how they got into the house? I don't leave my windows or doors open and it's hard for me to fathom over 20 flies and counting flew into the house to lodge somewhere until reaching adulthood. He suggested that I get one of those foggers to set off. Did that before I left today. Okay, he tells my sister to remind me to turn the heat off because some lady in the east coast left the heat on, the house blew up and they charged her with arson. Okay...turning the heat off I did not do. Great, the house is going to blow up, I'll lose all my sentimental valuables and either end up in jail or back at dad's house. After what sounded like the beginning of whimpering on my end, my sister/landlord agreed to check on the house to make sure it didn't blow up. Damn flies.

The Chair

My dad had chemo today. Lasted about 4 1/2 hours or so. He had to sit in "the chair" while they administered the treatment by I.V. "The chair" is a recliner my dad has talked about for years after one of his visits to the oncologist for his prostate. "Some people sit in that chair all day," he'd say. Now it's his turn. Apparently this particular "chair" is one of the most comfortable recliners in the world. Although tonight when I asked him if the chair was as comfortable as he'd been told it was by other patients, he said, "Nope, mine wasn't comfortable. Made my back hurt." I could have gone upstairs and lost myself inside the pages of the really good vampire huntress novel I was reading, last one in the series, but instead I asked the question. "Why wasn't it comfortable Dad?" He paused in that dramatic way he does right before taking the really long way to tell what should have been a very short story. "All the good chairs were taken." My mind slipped back to the book waiting for me upstairs. Tempting. "So Dad, of all of the really comfortable chairs for chemo patients they had in the place there's only one left, you get it and it's a bad one?" He squirmed, trying to find comfort in his own recliner, purchased right before the surgery. He still had trouble sitting without a bit of discomfort 'caused by his incision. "That's right...but you know that's the thing about Doctor Jen's patients..." And so it goes. The point is, he got through his first chemo session and was still in a fairly good mood to talk about it. On a scale of 1-10, a 5 works. Yes, we'll take it.

Monday, Monday

Dad's in the living room talking to the therapist (and talking and talking). I'm in the dining room trying to lose myself on this website. She's trying to convince him to wear his ADT alert necklace around his neck, and he's trying to convince her it's just fine hanging on a picture above his bed. "I can't handle wearing something around my neck, " says my stubborn Dad. "So," she says sounding befuddled. My dad's really good at befuddling people. "You'd rather risk your life than have the alert necklace around your neck, within reach? Hmmm." Good luck trying to understand his thinking lady, I've been trying to figure him out for the last 51 years. Now she's having him take a short walk from the living room, through the kitchen, down the entryway and back to the living room, and he's talking non stop all the way. She tells him she'd like him to walk for about 4 minutes. They're on the third go round when he asks, "What if I fall?" He explains that he already had his exercise for the day 'cause he went up and down the stairs when he showered that morning, and was a bit tired from the excursion. She tells him if he falls she's going to leave him on the floor to see how long it takes him to get to the life alert necklace hanging on the picture frame over his bed. Funny. I like her.

Did I mention he was listening to Andre Reiu last night? One more step toward getting back to his norm. Okay now he's going on about the difference in the food served at St. Joseph Hospital and Madigan General Hospital, how hospitals try to cut cost, sad shape of the country in general and how you used to be able to trust people. "Uh huh," she says, now taking his blood pressure. He's talking about my mom's old walker and how he tried to give it back to the hospital later and they wouldn't take it. Another "Uh huh." Um...the one-sided conversation has just taken a sharp left toward China...and birth control. Doesn't surprise me but I think the therapist is a bit rattled. So now there's a bit of shuffling around as she wraps up the visit, front door opens and a mumbled goodbye as she makes a bee-line to her car sitting in the driveway. As I'm typing these words onto the page I hear the squeal of tires on gravel. Bye-bye.

Home Alone

It's Saturday. Last night was spent in my own abode sitting on the couch watching DVDs from Red box. Very cool, very peaceful. Here's my itinerary, at 1:30p.m. I'm off to do my volunteer work for hospice, where I get the opportunity to drive a patient's wife from one facility to another, so she can visit with her husband for about 3 hours. I usually pick her up again at 4:30 p.m. to take her back home. In between I'll spend a pleasant hour or so chatting with another hospice patient, a really gracious, classy 80-year-old woman so full of life and verve she always leaves me amazed. It's going to be a good day. Having some alone time has done wonders for my mood. At 5:30 tonight I'll return back to my place and sit in front of the TV again to just...chill. I'm loving it.

Yesterday, Megan, my niece, spent time with Dad, chauffeuring him around on some errands and fixing his dinner. Today and tomorrow my sister Jean will stop by for a short visit to check on Dad, and feed the dog. Cool. She was very willing to spend the entire weekend with him, however he wouldn't let her bring her dog. Vicky will drop by as well to tidy up the space where Dad has parked his bed. It's a pigsty. Nice to see what prevails when Debbie and I step aside. He'll be just fine.

Geez, I'm already looking forward to next Friday. Ciao.

P.S. Debbie called to "warn" me she's stopping by and will be staying the night. So much for alone time. It's alright though 'cause everything's back to normal for this weekend, and that's okay with me.

Pissed

I must be the worst caregiver ever. I just spent about a hour on the phone with my uncle complaining about my dad, my frustrations over his nasty attitude, and without a doubt conveyed my total discombobulated state of crazy. I'm sure he thinks I'm the worst kind of daughter, and will no doubt tell the rest of his siblings their eldest brother needs to be rescued from his uncaring offspring. My uncle will be here on January 27th - THANK GOD! He said he'll stay either 2-3 weeks. Notice how he gives himself the out of being able to leave earlier. He knows his brother well. For the record, I love my dad--would do just about anything to help him recover, but he can be very, very difficult. This isn't an anomoly, he was difficult before his surgery.

Before the surgery we tried to assure him that he could count on us to help him recover. His response, "Oh well, everybody says they'll help but..." I truly do not know why he has such a lack of faith in us. Okay, so I grit my teeth and allow his comments to flow over me like the sea. Positive energy in, negative energy out...breathe.

So yesterday my dad and I take a trip to the store and then stop at the gas station. Out of the blue, he says he's decided he's going to start driving again next week. I remind him that the doctor said he didn't want him behind the wheel of a car for at least a month. "Well," he says. "You don't know what he said you weren't there." Did I tell you my dad was a master manipulator? I work full time, but between me and the rest of my family, we make sure his needs are met, and up until today, we never left him alone. He continues, "The doctor just wants to make sure I can get to my chemo treatments every Wednesday." We'd taken him to every appointment since he got out of the hospital but for some reason he'd come to the conclusion we weren't taking him to his chemo appointments? Positive energy in, negative energy out. I take a deep breath before responding. "Dad, we will make sure you get to your chemo treatments." Silence. "Well," he says. "Everybody says they'll help but then..." I lost it. Because this was almost three weeks after checking him out of the hospital, and after changing countless colostomy bags, and after only half sleeping because of trying to keep ears open to any sound that he's in distress, and after changing his bandages, keeping his wounds dry and clean, and cooking his meals and cleaning up clothing dropped in the middle of the floor in the kitchen, outside of the laundry room, on the floor in the living room aka makeshift bedroom. And after all that, nothing seems to change his opinion of his worthless, fucking daughter. I'm so tired.

I'm looking forward to spending some alone time at my own home tomorrow. But I'll be back Sunday night...or Monday. Maybe.

Trials & Tribs

I haven't written on this blog in quite some time. I think I lost faith in the healing powers of putting everything out there. I don't feel healed. Not to mention that it's not very nice of me to put all my negativity into the universe via this blog, but here it goes. I'm hopeful that anybody I told about this blog is no longer tuning in so now seems a good time as any to spout off. My dad was diagnosed with rectal cancer in November. It's weird how quickly things take off after an initial diagnoses.

The surgery was set for December 4Th, same day mom died. The days after surgery will be ingrained in my mind and my heart forever. They removed his rectum and rerouted everything through his stomach. Although they had him doped up with morphine and pain meds I can't even pronounce, he suffered. His memory is sketchy on the days following the surgery, but I remember. In the days since, he's learning to live his life with a new appendage, the colostomy bag that must be emptied twice a day, every day for the duration of his life. Up until yesterday, this duty was performed by my niece and I who were "trained" by the ostomy nurses at St. Joseph Hospital. Because of the red tape that is synonymous with insurance we were initially told he would only be allowed up to 20 bags a month which means he would have to empty and reuse bags to conserve. The pre-registration nurse at St. Joseph told us there was an option for getting disposable bags, however "they", I'm not sure who "they" are but I can guarantee you they're probably not dealing with the mess of having to reuse bags, disapproved of human waste being deposited in the garbage can, ergo the first option to reuse bags. Of course, we know it has to do with insurance costs. It always does. The nurse said we had to prove my dad was a candidate for the disposable bags. So let me tell you the process for emptying a bag. Supposedly for a man, he should be able to sit on the toilet and allow the bag to hang between his legs. Remove the clip from the end of the bag and allow the waste to empty into the toilet. This is how things are supposed to work. Not so in real time. One, the stoma -- the medical term for the new organ on my dad's stomach where waste is secreted, sits high on his really full tummy so when it hangs down it literally sits on his lower abdomen. Before emptying the bag, he has to remove the clip, then fold the end of the bag up so waste does not soil the end -- if waste taints the end of the bag, there is odor because that's the part exposed after applying the clip. Well regardless to whether the bag is folded up or not fecal matter always finds its way to the end of the bag. To circumvent this we were told to use wet wipes to clean off the end of the bag, which is not a pleasant task. After emptying the bag, he has to unfold the end and gently wrap it around the clip. My dad is 78 years old this January, a diabetic, which means that cleanliness is critical, and at times his right hand shakes so badly he can barely hold on to the needle to give himself a shot of insulin, let alone maneuver the colostomy bag attached to his stomach. There is no way he will be able to easily adapt this routine into his daily life, not without there being some messy moments, which would be very embarrassing and upsetting for my very proud father. And just for the record, the waste in the bag never smoothly flows from the bag to the toilet especially as it becomes more solid. After a bit of discussion with the home care nurse, it was agreed disposal bags would be more suitable for Dad. Yesterday Dad was able to change the bag in the privacy of his bathroom, by taking off the soiled bag and tossing it in the garbage, and sealing the new one to the wafer attached to his stomach. I'll tell you about the wafer later. I think that small measure of privacy and independence will go a long way to getting some normalcy back into his life, which I hope will help in not just his physical recovery, but emotional as well. We get 60 of the disposal bags. So generous. Okay, I'm done talking about this for now. But I have so much more to say.