My days are plagued with itchy skin and pacing. It's been one week and a half a day and I still don't really know what to do with myself.
I want my dad to help me through this. Not in spirit, I want him to be physically here. I've crammed a tattoo (see characature above), a puppy (see side) and a new workout routine into the week hoping to find some comfort, but there is none. I have an itchy arm (along with my basic uncomfort), a puppy who eats Evelyn's dress up shoes and sometimes "excretes" in the house/another soul to take care of, and am still fat.
I've tried (well, sort of) to go to work. That didn't work either...My staff has become so knowledgeable and responsible that I was left trying to figure out PR & Marketing stuff...Not good right now.
My DAD was the only person in my life I rarely fought with. Even through dissappointment that he had at times with me, he never closed me out, there was always advise to follow. I walk on eggshells with much (not all, but many) of the rest of my family that I'm left feeling really rejected. EDIT: My brother has some "closeness" issues...I shouldn't make all the rest of the family wonder who I'm talking about. I wish that I was closer with my mom, but judgement usually gets in the way. But, I suppose that's what happens when you put all of your eggs in one basket-my dad's. I never imagined I would be left alone. Yes, I have friends and thanks to them for putting up with me and being my friend, but where am I without my Dad, my business partner, advisor, BEST FRIEND? Where am I? (Retorical, no need to answer).
I miss him more than my heart can ever express. Day 8 of no talking. Where is my daddy?
I'm not sure what to say. I feel like I should right a blog, but don't feel like there's much of a point now since Dad's gone.
I guess the most important thing to let you all know is that we are all hanging in there. I know so many people have offered help, want to do something to help or just want to make sure I'm okay, and I appreciate that. I really do. But I have no idea what could help me right this second. Nothing can replace the gaping hole I have in my heart, in my life right now. I can't even call my Dad. No matter how far away he's been in the past, we've never gone more than a day or two without talking. So, best I can do is try to rest my exhausted head on my couch. Please don't take it personally if I don't: A) Answer my phone, including text messages, B) Respond to your emails, or C) Want you to come over.
I'm having a hard time trying to talk to people. I know most have a hard time figuring out what to say to me, but "How are you?" will most likely net you an explosion. I'm terrible! I'm sure it will get easier, but right now, I'm just not doing so well.
Wilmont Hollis Chandler (Wil) passed away today after a heroic battle with cancer in his own home surrounded by family and friends. A beloved husband, father, grandfather, brother, friend and pillar of this community, he will be sorely missed by all.
Again, for my benefit, please listen to the song to the right while reading this blog....It means a lot to me...
Dad is pretty incoherent at this point, telling Anne and I that we need to "clean up all of the splotches on the floor" and that the way for me to reconcile with Columbia Gas would be to "take a picture of the biggest group of birds I can find on the beach and then show THAT to them." He's often agitated, saying that Anne's being mean to him by not "letting" him get up (an impossibility with only one person, let alone extremely difficult with two or more). It's hard. Most of his "words" are gibberish, me leaning in to try to make sense of the moans and blah....This is shit. This is ridiculous.
Dad's too big to move entirely and so he's now been forcefully bedridden, with a condom catheter and a diaper on. THIS is not my dad. BUT, he still smiles. I thought for a long time that his smile would be with me forever, and now I KNOW it will...The little bits of smile that we get now-a-days are so intense and perfect. GOD! What are we going to do without that smile???
I'm scared because my dad's dying. He may not (most likely) last even through this week, but I am somewhat comforted (at least for the time being) that I will forever see that smile in my head, in my dreams, in my heart.
Please listen to the song on the side while reading this...
I'm writing this blog from afar (afar being only a block away from Dad, but it feels like cross country right now). The information I post today is information gathered from sources closer to Pop right now than I can be.
Dad has had a good couple of days, I'll reiterate a little and add some new. He's been on the porch enjoying the couple of nice days thanks to Michael and others. His appetite is back and he's actually had a couple of drinks, and by drinks, I mean "drinks-drinks" requesting a beer when his friend was over yesterday and a scotch the day before :) Not necessarily a good combo with the Morphine, but fun for Dad none the less!
From all accounts, Dad seems to be a bit more confused today. He apparently goes between speaking gibberish with a couple of sensical phrases here and there. I'm worried that we're getting closer to "the end." Most of the literature I've read speaks of a "bounce back": a whim of energy and lucidity that is the peak before the major downhill. But, I don't know. That's the main problem. We just don't know.
The other day I closed myself in the bedroom with Dad after Josh & I having a good visit, talking about how the two of us would carry on without Pop. I explained to Dad that we worked out how to take care of all of the rentals, the store and ourselves. I reassured him that we were going to ban together. That we would take care of everything: TOGETHER. That he wouldn't have to worry about either of us; we would worry about each other and help Anne together. I think that was a big relief for him. And I'm happy/relieved that it may have given him comfort, but am worried that I've sent him into this downward spiral...Maybe I made him come closer to "the end."
We continue to deal with sewer issues and flu symptoms from the baby girl here at 145, so I'm not quite as involved as I feel I should be. I want my Daddy. I can and will deal with the house stuff, business stuff, etc. by myself, but have a huge hole that cannot be filled by anyone, no matter how caring or helpful the person is. I want my Daddy to resolve issues, give me advice, tell me what to do, explain why I feel the way I do and how to make it better. I yearn for my Dad and his Wil-ness.
All in all...Please know that if you've contacted me in any way and I haven't gotten a chance to respond, it has nothing to do with you. I've been inundated with calls, emails and love from many and appreciate all of it, but don't always remember to respond or know what to say. Please try again.
The past week has gone by relatively quickly, so much has been going on that it's been hard to find the time to blog.
Dad is doing pretty well right now comparatively speaking...He's finally gotten some of his appetite back and has been requesting funny stuff, Egg McMuffins, fruit danishes, and even Lambic Framboise :) Lol...It's nice to see him feeling a bit better. Physically, we're still pretty much the same, which is bad. Rolling over is impossible, Showers are probably not going to happen for much longer and Dad's really tired-worn out from being transferred from bed to wheelchair even. Lots of people have been coming to visit and helping when they do. Thankfully, my stepbrother, Michael came in to town for a few days to help out from NYC. Transferring Dad has gotten so difficult that Anne and I are both having trouble moving the poor guy, so it's a huge relief to have an extra set of strong arms around.
A couple of weeks ago, Colin smelled gas outside (unfortunately, not the human kind), so we called Columbia Gas for them to come check it out. The guys showed up and figured out that the leak was right out front of our house and in order to fix it, they would need to dig up an rectangle taking up the entire right lane of E. State. When I arrived home from a day of helping take care of Dad, there was a back hoe with each tire on my rosebushes and my front lawn totally destroyed from the bucket. Trucks were parked all over the yard; it was a mess. I was in tears. REALLY!? REALLY?!!!! Ugh. So after talking to the guys working and crying, they fixed the leak, and the yard, and somehow my roses seem to have survived. Thankfully we lived through it. UNTIL yesterday when my basement flooded because the line from the washing machine was backed up (or so we thought). Turns out, after calling the plumbers on a Sunday ($$$$) it wasn't our line, it was the entire sewage line. Apparently, Columbia Gas cut through the sewage line just from our house! SERIOUSLY?! So, the City of Athens guys are here today trying to fix it and we're stuck with VERY limited water use, no dishes, laundry, showers and little flushing only. The City workers are so nice, I know they felt bad when telling me this problem was NOT going to be fixed soon.
So, that's my venting for today. I need to go attend to my little girl, who came home from her Dad's house last night with a cough and fever. Awesome.
It's truly amazing how many friends my Dad has accumulated over the years...many of whom were always close family friends and "around" but somehow without me realizing that Dad, I think, surrounded my brother, Anne and I with the people we would absolutely need if something ever happened to him (not sure he realized that either). The outpouring of kind words, offers to help and just basic support has been overwhelming and comforting at a time like this. Unfortunately, there are some people that have a harder time handling this "death" thing than others and it's hard for me not to label them as "fair-weather friends." I'm so protective of Dad that it's difficult not to be angry at those I know are important to him that haven't shown up or even sent a card. Guess I should get over it.
So far this week has been a lot of the same. Dad seems to be in about the same place as I left off in the last blog: really physically weak, to the point of needing help with just about everything. The difference in this week is that Anne is now home with Dad, no more school and Josh has been around a whole lot more-both are fantastic and quite a relief for me and I think for Dad as well. BUT, all of the sudden, Dad only wants the men to help him with transfers and doesn't seem to want to count on me for much. I guess he's trying to give me a break, but it hurts that he doesn't seem to trust that I can still do all of the things I've been doing for a couple of months now and even gets a bit snippy with me wanting to wait for Josh to move him around, when in fact Josh is looking to me for proper transfer "etiquette" and how best to go about doing whatever caregiving needs to be done. I am so thankful to have more people around, I really shouldn't be complaining.
I stopped by Dad's this morning, to find him up and in his favorite recliner in and out of sleep. The Home Care Aide and the Hospice Nurse were both coming this morning at 10am and I wanted to be there to hear what they had to say. Dad, Anne and I talked for a while before they got there. Anne said that in the middle of the night Dad was really agitated because he was uncomfortable and unable to move his feet by himself. At this point he has trouble talking and is, at times, difficult to hear/understand, so the frustration only increases when we can't read his mind to do what would make him more comfortable/happy. This becomes even more frustrating to someone when its a middle-of-the-night thing. Ugh. Dad is relatively pain-free except through the night, when he's lying down he says his side hurts under his right rib-cage. Cancer. That particular lung is mostly completely diminished and so that's where the pain shows up. Thank God (or whoever) for left lungs! The nurse suggested that we start using Morphine between the agitation and the pain just at night. That will hopefully help him relax and rest more peacefully.
I called the crematorium today, a set up best to do before hand according to Hospice as they will take care of making the phone call for us when Dad does pass away. The woman I spoke with was very sweet and explained how much easier it would be for everyone to go the direct route instead of a funeral home. How screwed up is it that I'm talking to someone about this?! After getting off the phone and dry heaving a little I was able to get it back together; Is it weird that I feel physically ill after that phone call? Probably not.
Okay, so that's kind of it for now. Please feel free to "share" this blog by passing on however you would like to people that would like to know.
Saturday's have started to totally blend with every other day of the week. Much time spent at 180 E. State with Dad happens just like every other day, so I was there for most of the day yesterday and I actually had a sleepover with Dad last night so that Anne could go to dinner and to see a favorite band with some friends and then get some sleep! I'm glad she got to go out and have fun and a break.
We were watching some Monk episodes on Roku with Nana Pat when Dad said that he thought he would like some fried chicken from KFC. After I got back with the two drumsticks requested, Dad ate them like a champ! YAY! Oh, no, wait, here they come. Right back up. Poor guy. Which then threw Dad into an incescent and desperate coughing fit, prompting my call to the Hospice Emergency Line. For those of you unaware, when people go on Hospice, you no longer call 911, you call the Hospice Emergency line for the on call nurse. Somehow poor Terri, our Angel and great family friend, who was out to dinner with Anne got the on-call call though she wasn't the nurse on-call any longer. She rushed down from uptown to see what was going on and in the 10 minutes from when the terrifying coughing began, Dad finally was able to get his breath again and relax at least a little.
Here's my predicament: Dad is still such a proud man and no matter what I do, I don't want him to feel any humiliation, though at this point it's kind of inevitable. I have a hard time transcribing his blog for him, because a lot of the stuff he wants to say isn't exactly the truth anymore, such as "I have a hard time walking." Understatement of the century. I feel like I owe it to myself and all of the people that care and have cared about him over the years to tell it like it is. I hope that's okay.
Bedtime came, and it was hell to even get him into his hospital bed. He has lost control of pretty much all muscle function and so he is totally unable to get his legs into bed or move them when they are there. He is unable to flip over or even slowly turn in bed. Luckily he can still tell people when he needs to go to the bathroom, but getting him into position to do so is back & heart wrenching. Okay, so back to our sleepover. I think maybe between 10pm when we went to bed and 7:45am this morning I got about an hour maybe a little more of sleep. He's constantly uncomfortable and needs to pee a lot; between those two things bedtime is actually a full time job. Dad can get a little confused at times so at one point when he asked me to turn him onto his side and I did (a 4 part process at least) he told me that I had turned him onto the wrong side! AHHHHHH!!!!
Anne woke up this morning and relieved me. I was supposed to have brunch with them at 10am but had to limit myself and tell Anne and Dad I couldn't do it. So I slept until 12pm and am still pretty groggy and exhausted. This blog may not make any sense! I'm signing off for now and going to sleep. Again.
So today the Home Health Care Aide came to help me with Dad. It's definitely nice to have someone around with me during the day. John, the HCA, assisted me with getting Dad into and giving him a shower (a feat that has become next to impossible with just one person and Dad). 1st shower in a week, which makes me feel awful that he's been without, but how?! So, after the shower, Dad was completely worn out and we put him in bed (remember, he can't FEEL his legs let alone move them, so the poundage of dead weight is incredible). He looked a lot better but was exhausted from the whole ordeal. Was it just a week ago that I and Anne were able to do this on our own? How? Oh man...
Then visitors. Which, though I know in a way they keep Dad going, are exhausting even for me and I think hard for Dad to see because people are seeing him. Now. Reality. I sat down for a minute and the Hospice nurse, Julie showed up to assess Dad during her first visit. He asked repeatedly if he "could go off of Hospice" if he got better. Of course he can. BUT he probably shouldn't with his rate of deterioration. He's unable to get out of bed without tons of help. AND, Dr. Rothstein, HIS FRIEND, was the one that recommended him to Hospice. Good. I think he was in the state of mind that I had called Hospice because I "think he's more critical than he is." Unfortunately, I've just been reading the obvious signs and am with him so often, I know this is bad. (For those of you who don't know, I did go through a year of nursing school and was a CNA at The Lindley Inn, an assisted living home locally). I've seen this sort of thing before whether Dad wants to admit it or not.
AND, now, for my selfishness...Thank you to all who have sent Dad cards, flowers, etc. AND thank you so much for those of you who have thought about and sent ME kind words cards and gift certificates! I'm not being strong to win an award. I'm being strong because THAT'S what I OWE this man. I (ME) owe this man more than I could ever put in words and for that I can only repay him this much. LOVE is what makes me wake up and go to his house every day. NOT faith, not guilt, not responsibility. He deserves the best treatment he can have, and, even with the HCA's and Nurses, the best treatment he can have is from family.
I went today when I left Dad's and bought myself a "Troll" bracelet and some beads/charms. I bought a couple of glass beads for filler, but have a smiling charm, 'forget-me-not', tranformation, and the monkeys: Hear, see and speak no evil. Those were my initial important choices for me. For Dad. It's by no means full, but I'm filling it with strength. Something tangible to hang on to. My form of rosary.
Today is the day that Dad has decided that he will do no more chemo. He's become weak to the point of almost completely bedridden. Every day this week has shown extreme deterioration and more inability to function. Talking has become uncomfortable along with everything else. Just today I decided that visiting hours should be limited from 11am-2pm and 4pm-6pm are when people can come by to see dad. Please observe the "Nap in progress" sign and come back another time. But, at this rate, I am unsure how long visitors will be a good idea at all, so please stay posted.
I called Jocelyn, Dad's Oncology nurse and told her the situation and all of the goings on this week. I also explained that Dad was pretty die hard to still come and have his CT Scan read, though I and the family didn't see it being physically possible, comfortable or worth it. What would it change? Another round of chemo, which was supposed to be adminstered this coming Monday, would surely kill the man, painfully and fast.
Jocelyn got on the phone with Dad and explained her position (same as the family) and I think that's what Dad needed to hear. So the CT scan and upcomng oncology appointments have been canceled and Hospice will start tomorrow. It's a relief in a way, but now we have to work toward the end and that's really tough.
Last night Colin and I fell asleep on the couch, so I don't know whether it was the strange sleeping place or what, but my dreams were crazy. I had one where I was careening down a mountain road (2 lane) in my mini-van and the brakes just weren't working. I felt like I was in one of those racing video games but it was so realistic. It was all I could do to make all of the corners without smashing into another oncoming car, the side of the mountain or children! Why were there toddlers crossing a two way street in the middle of my high speed descent? Jesus. I finally hit the bottom of the hill and regained control of the van, but not my composure. And then I woke up. It's sending me into a panic just thinking about it.
Dad is confined to his recliner or bed as of yesterday. He's able to get up just enough to make it to his wheelchair. At this point talking is difficult for him. He's started to wheeze and is coughing up some pretty nasty stuff regularly (which is good in a way so it gets out of his lungs). But, it's not looking good. I'm wondering if he'll be able to make it to Columbus for the CT scan on Saturday. I told him he really doesn't have to go, but he says he wants to know "how bad it really is." I'm no medical professional, but it's BAD. *Sigh*
I love my husband. Love, love, love my husband. Maybe THAT'S why I married him! He has been the most fantastic partner and step-dad in the world. He's up every morning with Eve and I (now he's letting me sleep in a bit!) so he gets Evie all ready, cleaned up, fed and to school so that I don't have to stress getting over to Dad's. He even gets up early when he's worked until 4am that morning!
Unfortunately, 10+ years ago Colin lost his dad to a battle with Leukemia, so he and his family know all too well what I'm going through. Fortunately they're such a close family, they all stuck together in the tough time. I feel like I'm mostly alone, though it's been great having some help and volunteers from adoptive family (friends).
I spoke to Colin's uncle Bob last night, who works in D.C. in Mental Health. Among other things, he asked me if I felt like I've said all of the things that need to be said to my dad before he passes...I told him yes. I feel fully confident in the fact that I've done my best, said my peace, and that Dad will pass on peacefully knowing how much I love him, how much I've learned from him and how much he will be missed. Bob asked if I'm carrying a lot of anger? Yep. Pretty damn angry at the disease. BUT, though I don't know why, though I feel like I'm carrying a whole lot more of the weight than I should be (literally & figuratively) I'm more just disappointed. I wish that everyone involved in this terrible situation would "get it." I understand people deal with these things in different ways, I understand that some people "can't emotionally handle it"-Awesome. Where does that leave me? Alone again. Holding my dad up and trying to "be strong."
I talked to Dad today and told him that I would like to have some of his ashes. And told him that, even though he would probably never say it: Josh probably would like to have some too. I was looking online at different options and think that I'll get Dad an urn of some sort for the house but a locket for me. They do have lockets for cremains! So, Dad will have a better place than next to my iPhone and chapstick in my purse :) Whew.
...Well, at least I think it's been two days? Has it been two days? Man. I have totally lost track. I feel like I'm on a tilt-a-whirl or something and just want to cry, or throw up, OR get off the damn thing.
Dad's been having trouble even getting out of his recliner, but the past couple of days have been different. His legs just won't work anymore and so getting anywhere in the house is almost impossible even with the help of a walker and someone's assistance. Today while I was with him he wanted to go to the bathroom and so we set out in that direction. Pretty quickly I realized that, even though I'm a strong girl, this was going to be no easy task. We got as far as the little bathroom in his hallway and he basically collapsed without actually going down. Between him clinging to the door jamb, sitting on my knee and me holding him up he was stabalized-ish. But where do we go from there? I stood praying someone would come in just at that moment, but they didn't. I finally used my motherly strength to basically "lift the car off of my child" and got Dad onto the toilet in a bathroom about the size of a closet. Thankfully we were able, with him holding my shoulders until we got back to the walker, get him safely back to the recliner. Is this life? Dad and I talked today about his final wishes. And, true to himself, it will be a non-conventional celebration. I asked him where his cremains would be placed...a small cemetary out towards Albany. When I asked if that's where he wanted to be or if I should take him back to Wisconsin where he grew up and he said "This is my home. This is where I grew up. That's where I want to be. Is that okay?" Is that okay? Of course it's okay Dad! I just want him to be happy. But I'm not going to say that I'm going to be more than a little devestated when it happens. Is it weird for me to want a part of him? To want some of his ashes for myself? I asked him. He laughed and said "What the hell would you do with them?!" Hmmmm...I never thought of the answer to that. Maybe carry him around in my purse? I know that's weird, but to think that my dad, with whom I've NEVER gone more than two days of not speaking, won't be right next to me.
I guess this is where I need to really start exploring something spiritual. Not necessarily religious, but something that will keep my faith in my dad always walking with me. Helping me make my decisions. Smiling and laughing with me about silly things I think only "us Chandlers" get. I can't even find words for the pain of the inability to be with my dad anytime I would like.
...The most amazing man I know. My rock, my support, my spirit, MY higher power. He is THE reason for so much, not just me...Not JUST everything I am...Everything I've done and a lot of encouragement to others.
I know you know I love my dad. As I'm sure if you're reading this you too have a reason for loving him, whatever it may be. BUT, let me be selfish for a minute. Until my baby girl came along, and even since, I have debated whether ANYONE in the world could be as strong, selfless, reflective, unbiased, and wonderful a person as MY dad is and has always been. He is one of my two FAVORITE people in the world. Sure he's been an ass...who hasn't? He's guilty of human goofiness just like the rest of us. But, for me, the reality of it is that I can hardly find a childhood (or adulthood) memory without my Papa in it.
So, this is amazing considering I can't remember what day it is to save my life at this point...
Just me and my daddy: Since I can remember, Monday nights were always 'Murder She Wrote' with Dad and I at 8pm on a pea soup green, itchy couch, trying to figure out the fairly obvious mystery. We used to play games as to who could guess the culprit first and I was 4 or 5 years old :) Now, thanks to Netflix on Demand, we're back at it with endless seasons (12) 500+ episodes of the damn show :) It's silly fun.
Remember the Korean restaurant where O'Betty's is now? Well, that was where you could find Dad and I every Wednesday night. Eating Squid soup and trying the SUPER spicey pork to see who could eat the most slices. It was one of the tastiest things I've had in my life, so the burn was worth it!
Every other evening, if I hadn't already been with him showing houses or at Athens Realty answering phones (I was at most 7!) we would drive home, eat and then walk to the Front Room at the real...OOOps!...I mean old Baker Center, where we would split real....oops!...I mean the old time (FRESH) Crumb's cookies and he would let me drink cinnamon decaf coffee just like the rest of the cool grad students in the place (again-I was 7ish :). Then off to bowl downstairs at Baker...About once a week.
If we weren't at the Front Room, we were off driving around, yes-driving! Even me! Dad would take me on back roads to teach me how to drive even before I was allowed-lol. A concept I would never, in these days consider with Evie.
Most mornings we would go to Frisch's Big Boy (before it was gone of course) and I always got awesome pancakes w/ the works and bacon. Eventually, after Frisch's closed, we started frequenting Casa and have been there some 20+ years now for "church" and some.
I'm sure most of you know my parents were divorced when I was very young (5th grade) but Dad moved a block away from the home he and my mom lived in (mom still does) so that I could walk back and forth. There was never a custody battle, just respect for each other and me. Mom went through some tough times and I remember Dad, even after divorce, helping her out with the house, hiring people to fix things, etc. That's what family is for after all, right?
By middle school, I stayed with Dad mostly, but still only a block from Mom, and he would walk me to school every day even though I really could have walked myself. It was our chance to talk..reflect...joke like Chandlers do...Whatever. Well, actually, he would walk me to about a block away, give me a hug and let me go the rest of the way so I wasn't "embarrassed" by my dad (geesh).
I was a pain in the ass through my teenage years. I'm sure both of my parents thought I was trying to kill them. BUT, when it was time to really learn to drive (remember, years before I already had) I remember telling Dad that I wanted an automatic. OH NO! That was NOT how we learn to drive. If I wasn't willing to learn to drive a stick shift, I wasn't allowed to drive at all! Also, it was a requirement, by Dad, that I know how to change my own tires, oil and check the fluids in the car (no girly girl bullshit here!) So, I learned...I taught myself how to drive a stick out of sheer determination and boredom one summer. Eventually I went to racing cars in Florida (in adulthood/later in life) and will be forever thankful to my dad that I was able to because of him!
After I actually got my driver's license I was able to get to high school by myself. BUT, Dad was always the first one up, and, while I was showering/primping, he would turn on my car to warm it up. Every night when I got home he would put a piece of cardboard over the windshield to keep frost off. When I would go to get in my car to leave it was always warm, clean and had a glass of milk in the cupholder and a poptart or two on the console. God love my dad.
I don't know how many of you want to hear me rant every day, but I think of it as therapy; therapy that I really should have started a while ago because my head is swimming with all of the things I neglected to mention last night in order to keep the blog readable and concise. Hopefully all 5 of you reading this will stay tuned :)
After not being able to get to sleep until 5:30 this morning, I'm cranky and even more sensitive than normal. What's an insomniac to do? Well, this one still wakes up with her wonderful, bubbly 5 year old at 8am and starts the normal daily routine of feeding everyone (dogs included), making sure everyone has had their potty break and is dressed appropriately for the crappy, cold rainy day that today is before I get to make my coffee. Then it's off to Dad's to visit with him and talk to a good friend, Terri, about what Hospice care is and how we go about getting it. It's painful to hear Dad say that he believes he's going to stop his chemo treatment even though I fully agree at this point. As mentioned in the prior blog, the chemo has made him so sick, weak and miserable. Last night he laid down on the living room floor, as he often has when watching TV, and he couldn't get back up. And Anne couldn't get him back up either. Scary. Actually terrifying. No matter how much weight Dad loses, he's a large framed man and those bones are heavy! Luckily, I had gone to Family Oxygen on W. Union (still keeping it local!) to switch his oxygen provider and get him a walker, which apparently was just in time. He was able to basically climb up the walker until he was standing in order to get off of the floor. I wish I would have known, I could have gone over and helped as I'm only a block away. I'm going to try to find a small cot or cheap recliner so that I can stay with Dad over night so that he has someone close by. I did set up a monitor system today so that Anne can hear him if he needs her. Since she's upstairs and across the house in their old bedroom. He can no longer get up the stairs.
More about the walker: This was a necessity that Dad really wanted no part of and, actually, I in my heart, didn't want to admit he needed either, but in my head I knew it was time. After his chemo treatment this past Tuesday, he had gotten up to go to the bathroom (probably about 15 feet from his bed) and fallen backward onto a large, antique wooden chest. He bruised and ripped a hole in his bicep, which is relatively easy to do since his skin is like tissue paper at this point, and we're lucky that he just ended up with a sore back and not a broken-in-half-one. Then the next day, while alone and trying to get an ice pack for his back from the freezer in the kitchen (25 feet away) he became so weak he dropped to a sitting position in order to avoid a fall he felt quickly coming on and was stuck there...Praise the lord-he's finally giving in to the walker!
My wonderful friend, Jennifer, an RN with tons of background in Palliative and Geriatric care, came yesterday and did a basic assessment of Dad and bandaged his wounds from the fall and his chemo treatment appropriately and showed me how to do the same. She mentioned a few things that needed to be changed in order to make the house safe, such as removing a lot of the area & throw rugs. She also said that she's seen a lot of people with advanced cancer like Dad's and if he were to continue on the chemo he would probably die more miserably and faster than if he were to stop the regimen. Another pill to swallow. I promptly went to CVS and bought all of the wound care supplies than Jen told me we needed and made a little first aid kit so anyone can dress the wounds.
Last night when Evelyn and I went to visit, we mentioned going to Larry's Dawg House, a classy joint with 5 star cuisine, LOL, and it sounded good to Anne, so we drove through and brought it back for a hot dog and hamburger picnic in the living room at 180 E. State. Dad ate half of the burger only and a couple of fries. Not much for someone who needs to eat.
So...that's it for now...I'll do my best to shut up until tomorrow at least. Thanks for listening...Enjoy the present.
I'm doing my best to make lemonade (as my blog title would imply), but honestly, I'm having a hard time finding the sugar.
As I think most of you know, I have become my dad's primary daytime caregiver in his greatest time of need. For those of you who don't know, my dad is in now what would appear (and so I've been told by medical professionals) the end stage of Non-Small Cell Lung Cancer (no, he was not a smoker-in fact, he abhors smoke). This is a battle that he started 3 years ago this July (at Stage 4 I might add and originally given 6 months to live). He's been as he always has, strong, stubborn, courageous and vertical up until this past February when disaster struck in the form of an intestinal blockage that landed him at the James Cancer Center in Columbus, Ohio. During his stay he was relegated to a clear liquid diet, not that he was interested in any food really anyway, and ended up losing lots of muscle but gained lots of water (not good). I frequented the hospital (almost daily and all day) to keep him company, check his progress and love on my Papa. After 8 days, he finally was "cleared" and I was allowed to bring him home, but things had changed. Oxygen was a full time must; something that a stubborn and, still in HIS head, healthy man could do without. But boy was he wrong. Quickly we realized that this was not an illness that Dad seemed to be recovering from. Although he had cleared the blockage, he was definitely down for the count. Simple tasks became extremely trying and tiring. The little things that so often we all take for granted being able to do for ourselves had become a 2 person job.
In a way, I relish the fact that my dad bragged and bragged that I give the best showers in the world-thank you Lindley Inn and having a child ;) But in another, knowing that my dad, my rock was counting on me for something so simple (so many things in fact) was devastating. Watching him in so much discomfort, pain and feeling so feeble wasn't for the weak at heart.
And now it's April. Almost 2 full months since I've been taking care of Dad full time. So, with that little (very quick) background on what's been going on, let me get to the meat of this earthly injustice I feel caught smack dab in the middle of: My dad is apparently going to die. Now please understand that I am coming to terms with what is an obvious fact to those of us who speak with Dad's medical professionals and are with him daily. He is still currently on a chemo regimen. His last treatment was this past Tuesday and when he got back home it was straight to bed for 3 days. I've never in my life seen anything so incredibly heartwrenching. It's all I can think about. It's all I do think about. And there's nothing I, or anyone else, can do.
I'm going to keep it at that for now. I apologize as I know you all probably hoped for more uplifting news, but I don't have it. Please refrain from the God or miracle talk-I can't hear it right now. If you're reading this, you probably know me well enough to know that I won't listen to it and it will most likely just upset me more than I already am. Thank you all so much for caring and being my sounding board.