I've been in FL for about 11 days now. My dad's been wildly up and down, not just day to day, but within each day. He may have a lucid hour here and there and that's about it. Sometimes my mom wakes up my brother or myself to help her with dad if things get intense, and we try to help a lot during the day. Right now, he's completely unresponsive. That means that he's lying there, eyes open, staring, eyes sometimes moving, but no one is home. It also means that he clenches his teeth whenever we try to put anything into his mouth, so we can't give him any fluids or the lactulose that might get his body to expel the extra ammonia that's probably the cause. We're waiting on a hospice nurse to come and help. It's possible the nurse can get stuff into him and get him to the bathroom. Otherwise, it's off to the hospital where he gets a lactulose enema and IV fluids and whatnot. Fun fun. In the name of trying to see the humor in things, when you try to so much as put a straw in his mouth, my dad clenches his teeth and makes very unhappy noises, scrunching his mouth up like a little kid. On the plus side, my mother's breast cancer surgical infection has cleared up and she can finally return to her radiation treatments. She'd only gotten 3 before they saw how red and tender she was and pulled her out. Just for more fun, I've had my period the whole time I've been down here (plus some before I left home) ... I assume it's body confusion from the depo provera. Fortunately it's lighter than usual or I'd be in trouble. I can tell I ovulated too because I have fibroids on the right and whenever I ovulate on the right it pinches. My husband swears things are okay at home, aside from hip pain flare-ups he's been getting that sometimes make it hard to walk (and of course I shouldn't worry). Those are fairly new so that's fun. He's got an appointment on the 31st with an associate of the orthopedic surgeon who will hopefully be fixing the 2 badly torn tendons in his shoulder. Apparently getting that appointment is the key to being bumped up on the list and getting the surgery faster, so this is a good thing. All I can say is that I'm glad book 9 in a series I read just came out yesterday, and is sitting in the Kindle app on my iPad. If we end up going to the hospital I at least have a new book to lose myself in.

hoping things turn around soon for you all, Chris, and if a hospital visit does become necessary, then I hope you enjoy your new book! we're always here when you need to rant, don't forget that ok.

There's not much I can add...hang in there, Kiddo.

No hospital as yet. The nurse decided to experiment and see if giving him his lactulose via eyedropper would work. It only works if he's got enough consciousness to swallow the stuff and not aspirate it, and fortunately he did swallow it, even if he did a full body shudder each time. *chuckle* (Lactulose is very, very sweet and sticky.) She managed to give him his whole dose that way, by putting it into his cheek so he can't bite the eyedropper. (Sorry if this is TMI ...) He's rocking an adult diaper and now we wait 2 hrs and give him dose #2. If 2 hours after that there's no signs of improvement and the lactulose hasn't done its thing (binding to the ammonia in his body and flushing it out *cough*) then it might be a hospital trip after all.

good luck with dose 2 when the time comes.... hopefully your new book can wait until another day

Here's a funny. My brother had gone to an event today, and we weren't going to tell him what was up unless dad had to go to the hospital since there was nothing he could do here but fret with us. He asked, though, and we weren't gonna lie either. Once the nurse had come and we did the eye dropper thing and stuff, and I told him, he decided to come home. Except what he texted me was, "If I don't answer, it's because I'm dying." I wrote back: "Please don't die. " While I was laughing it finally occurred to me that what he meant to say, and probably got sabotaged by autocorrect on, was that "If I don't answer, it's because I'm DRIVING."

Gotta love Autocorrect! (Biggest misnomer EVER! "Autofu**up" would probably be a better name....)

Hugs Chris! I'm not that far away - so whistle if you need a mental break...

Indeed. Whee, we've given my dad round #2 of his lactulose. He wasn't any happier about it but he's still not responsive. The nurse will be calling later to see how it's going. Gah, it's so weird, he's "not responsive" but he does respond to some things.

Hugs! At least you have support, and enough to get a few breaks!

Lots of hugs, CW! Hope things get better soon!

So sorry things are getting rougher. Glad you got the meds in him. Wish I could give you a real hug.

In the middle of dinner my dad finally emerged looking for a bathroom. Yay! He's not particularly lucid but using the bathroom is key for him so that's good. Then he actually drank water and ate yogurt. Things are looking up.

Actually, I think he was being responsive in a way since he was clenching his teeth. Here's an autocorrect laugh for you. We have an employee's whose first name is Genecia. Autocorrect always tries to turn it to genitalia when I'm sending her a note. I have to turn it off every time.

When I talk to Mylari, autocorrect always tries to change it to malaria. Well it's officially called non-responsive, to differentiate it from being unconscious. He's more lucid today, thankfully.

Hang in there, Chris! Hopefully, things will continue to improve for your dad! Glad to see autocorrect is at least good for a few laughs!

Hi Chris, Yipes! I take one day to spend offline at the carshow and things go nuts. Glad he's doing better today though.

Mylari, your avatar is perfect for that post, LOL. Yeah, it's a laugh a minute here ... my dad will continue to deteriorate but we're trying to make it as comfortable and pleasant as possible for him. He's currently kinda confused and nauseous, but refusing to take his nausea meds, and we're not sure why. He seems to avoid them in general. I think it's just one more pill in a big regimen of medications. Right now he keeps stripping and then complaining he's cold. Never a dull moment. Whenever people want to come by I warn them that chances are good that they'll see my father in his underwear, if not downright nekkid.

Well, he seems to be slipping again. I have the feeling that in the morning he's going to be non-responsive, he's very out of it, barely responsive to questions now. I have plans with a friend and my mother told me not to cancel, since I'd just be sitting here counting time and fretting with her and she'll have to call hospice one way or another. Will have to play it by ear. She might change her mind.

I'm keeping my fingers crossed for you, Chris.

Ugh...so sorry, Chris. It was nice to hear that he was doing better for a while, at least. Hope you are able to have a nice time with your friend tomorrow. Sounds like you need a break...

yeah, don't cancel your plans, you need the break too, and sitting around just fretting wouldn't be very helpful to anyone, least of all your parents. thinking of you all, take care won't you.

Keeping you and your family in my thoughts Chris.

Mom got me up early to help with dad. He's not non-responsive, which is good. He's very much not with it, either, but that's always better than non-responsive. As my mom put it, it took 1 1/2 hrs to get him up, into the bathroom, and then back to bed ... lots of time spent just trying to coax him in this or that direction or to sit down or whatever. I'm not a very patient person by nature so I just keep trying to see it from his POV and so far I've managed to keep calm and go with the flow. I suppose it helps that I tend to arrive in the middle of the drama so I'm not worn down yet. *shrug* Mom's getting a bath so I'm sitting with an ear out for dad. After that I'll shower, and by the time my friend gets here, I'll be ready to go.

I didn't realize your family was so ill, Chis. I hope that your mother's health improves, and that you are able to have some lucid moments with your dad. I'm glad that you can still find things to look forward to in all of this.

I went out with my friend to a comic shop (no BOTP stuff, which I mostly expected, but I did get a Rocket Raccoon toy for the hubby!) for Mexican (I had some lovely Mahi fish tacos), we stopped by a bakery and I got a cannoli (for now) and a cannoli cupcake (for later), and then we came back. My friend went through this with her grandparents, who raised her, so she's good to talk to about this stuff. ***warning, the next part is a little gross but I have phrased it as delicately as possible*** I came back to find that (selfishly) I was away at a very good time. My dad apparently got up and, um, dribbled, um, (you don't want to know) from his office where his hospital bed is set up, through the (carpeted) master bedroom, and into the bathroom. Then he proceeded to stuff a whole roll of toilet paper into the toilet (he has a toilet paper obsession that involves a lot of plungers and the occasional need for drano). ***gross part over*** Now a hospice nurse is here to help him shower and shave and stuff, which is nice. She also helped us get the cap off of his spray deodorant. What hellish brute machine put that thing on?????????? Life still ain't dull!

I'm glad you were able to get a break. It's also good that you've got a friend who knows what you're going through. (And kudos for the great job of lessening the blow of the not-so-pretty bit!)

I do have a southern upbringing, and can manage to be semi-genteel at times, hehe. The look on my mother's face when I got back and asked her how her solo time went was truly priceless. TJ: Sometimes when people ask me how I am, I smile really big and say, "Well, let me tell you ..."

I have some GOOD NEWS to share. It helps to give a little background ... So I mentioned hubby has 2 torn tendons (the large ones) in his left shoulder. In BC someone screwed up in a report a while back and said we had a glut of orthopedic surgeons, but it was the opposite, so there are some wait lists at the moment. Nervous, hubby had called the surgeon's office since we hadn't been called for his appointment yet, and he found out that one way to get bumped up is to get an appointment with the surgeon's associate to see if he does need surgery, and how badly. That appointment was today. He definitely needs surgery. His options were June, or next Tuesday, so he's going for next Tues! Sooner is better than later, if those tendons tear completely he could lose use of his arm. Obviously I can't be there. I'd gotten the news about his needing surgery around the same time I found out I needed to go to FL, so I'd talked to Rob's mother. She's currently arranging a flight so she can help Rob out, so that's a relief too. Glad he's getting the surgery even if I'm across the continent in another country!

well that will be a weight off your mind. Hope it all goes well for him on Tuesday, and gets a speedy recovery too

Yeah, what KT said!

His mom arrives Monday to take care of her baby.

It was 3am ... CRASHBOOMBANG Me, very groggy ... "Uh oh ... I should probably get up ... could be mice ... could be nothing ... ah, there's mom's voice, she doesn't sound panicked ... but I should probably get up ... but it could be mice ..." Took a bit but I made myself get up. My dad had managed in his very out of it state to wander into the garage in an attempt to find the bathroom (let's ignore the fact that the garage is farther from where he was than 3, well 2 1/2, different bathrooms). Next half hour involved lots of herding and waiting, then back to bed. ZZZZZZZZZZZ

Thankfully it didn't turn out to be something worse! (For some reason my mind started working on how this could have turned into a warped version of "Where's Waldo?"....sometimes I seriously wonder about myself.)

Hehe, that is funny. We're trying to figure out how to handle the wandering since he's so stealthy and not with it enough to ring the bell my mom got him to let us know he's getting up and needs help. We might have to put some kind of bell or alarm onto the door of the room he sleeps in. We've tried locking all the doors so he can't get out of the house or into the backyard (fears of finding him in the pool in the morning) ... fortunately the sliding glass doors to the back are annoying to unlock and open even if you're at full mental and physical capacity.

You can get pressure alarms that go under the mattress that go off when the person gets out of the bed, that's what we used when granny 's dementia got bad and she started wandering. We also had alarms on the doors that would go off when they were opened.

Good suggestion.

It continues to be interesting here. Sometimes he's kinda lucid, even mostly making sense, but the word salad effect definitely comes into play. It's especially challenging when it comes to food. He'll say he wants spaghetti with a bunch of vegetables, but it's very hard to get down to specifics (what kind of sauce? which vegetables?) I end up bringing things to show him or asking him lots of yes/no questions (tomato sauce? butter? olive oil?) until I get a nod, and hope that we're in agreement on what the words mean. Other times he might be walking around the house in a heavily delusional haze, refusing to sit or lie down (which is problematic because he's shaky on his feet and we're afraid he'll fall), and sometimes trying to interact with things that aren't there because he's hallucinating. Somehow for Easter we had him at the table, eating, with pants on even. I was sitting next to him and he hijacked my salad without asking, but I'm getting used to that. Oh and Rob's shoulder surgery starts at 11:40am Pacific time or so ...

*hugs* hang in there!

I'm still keeping my fingers crossed for ya!

Rob came through surgery okay. Was just about to say that I've spoken to his mother but not to him yet, but I just got a text from him .... this should be amusing if they gave him the good drugs.

glad to hear Rob did well! speedy recovery to him!

Btw, we're learning that putting garnishes like lime or lemon on my father's plate is just plain mean. Every single time he tries to eat them and ends up very displeased.

Glad Rob is ok. Sending hugs your way...hope you are taking care of yourself, too...

I try to get out and run errands when I can. I've been doing a 21 days of meditation thing and am a few days behind, but it's been helping I think. Got some cute new sandals today, heh. Sunday I'm going out with a friend! And I've discovered a cupcake place that I love, which probably counts more as hurting myself than taking care of myself, but OMG. Oh and I've been reading. Just read an EXCELLENT book called "Into This River I Drown" ... lots of story and emotion, not just a romance, though it's categorized as a paranormal romance. It's M/M but there's not a lot of sex stuff and it's not unduly explicit (I think, but then I'm okay with very explicit so sometimes I remember wrong). Very good book (award-winning, even) dealing with a lot of themes around grief and the necessary sacrifices of love.

So, btw, I haven't told you the best part. DH's mother is there to help him, like I said. Apparently she's in pretty bad shape. She has trouble with stairs (we have a split level house so we have at least 3 sets of stairs, though only one of them longer than 5 steps). She has trouble getting off the couch. She's terrified of driving the highway to the city hospital where DH's surgery was so they took an expensive cab there and back. Since arriving on Monday, she's left the freezer open for an hour with the ice cube tray on the counter melting, and fallen up (yes up) one of the sets of stairs (giving her nose rug burn and drawing a bit of blood). DH also calls the drive where she took him to get his prescriptions the "scariest of his life." Now I'm a little worried that calling her to come help him was a huge mistake!

I'm crossing more fingers for you!

Oh Chris! That is funny and horrifying at the same time! I'm sure he'll be fine! He made it this far after all!

Our dog is apparently doing her constant barking at the MIL if she moves (DH thinks it's because arthritis pain makes her move very slowly and the dog thinks she's "stalking") ... this is of course adding to the lovely atmosphere back at home ...

It's a shame I can't see the dog when she's barking at your MIL -- sometimes, when a person has trouble getting around, a dog will bark as a way of asking, "Can I help?" When I was getting around on crutches and my brother was visiting, that's the way one of his dogs would behave each time I had to get up. (One of his other dogs would sit firmly between my feet when I was sitting and guard me from any possible threat.)

Aw. Ours isn't great with visitors so it might involve some anxiety on her part. My MIL is better with her than my FIL so hopefully she'll calm down.

Some things cannot be taken for granted. At one point, if we saw my dad toddling toward the bedroom, we could be sure that he was going to get where he needed to go. Not these days. I had a bad feeling when I saw him heading there earlier so I went to just make sure he actually made it into the bathroom. Instead, I found him with his underwear down, hand resting on the dresser, totally getting ready to pee on it. Fortunately, I was able to redirect him to the proper receptacle.

DH needs me to come home for a bit and help him out since his mom has to go home. I'll be flying home April 20 and spending who knows how long in BC and then flying back to FL. At least I get to see my hubby and pet my puppy for a bit. Now I just have to figure out how I'm getting to and from the airports.

Jeez, You are going to be racking up those flyer miles. Hope he heals up quickly for the sakes of everyone involved. Hopefully you'll at least get some time at home to recharge your batteries.

Dogs are weird! I have every new person and some old friends give my dogs treats when they move around, funny how a little hot dog changes their attitude!

Oh yes, treats are definitely being handed out at home. I'm sure Piyo will have packed on a pound or two by the time I get back. I went to Big Cat Rescue in Tampa, FL today with diinzumo ... man that was awesome. If you ever go, take the Keeper tour, so cool!

You have incredible stamina and strength, Chris. A lot of people couldn't so what you've been doing for a loved one. I'm glad you got to visit with Wendy.

Honestly it's been taking up most of what I have left with the anemia and the low hemoglobin (and the 3 weeks of having my period, I've got a dr's appointment scheduled to talk about that when I get home). About once a week I've been planning outings with friends and that's been working out well. This is a rare one where I took my mom's car for the day (which is why she didn't mind).

So whenever I hear my mother's voice going up in octave I go to investigate. I walk into my parents' bedroom and my father is diagonal across my parents' bed, which is not a small bed. My mom's trying to get him moved so that she can actually get onto the bed and, you know, sleep, so she can get up early to go to her radiation appointment. My father, however, has been in a bit of a dick mood for the last 2 days and was just lying there not helping or acknowledging the requests. We kept having to haul him around this way and that, him grumping and protesting the entire time, until we finally got him in a position where mom could get into bed! It's always something.

Dad absolutely refused to take his lactulose last night. Since he was going to the bathroom and having some hemorrhoid issues, mom decided not to push it. Today he's borderline non-responsive. We can give him lactulose with the dropper but he puts up a serious fuss. Sometimes I wonder at this point if we're giving him the medication for him or us. He HATES the stuff and it's a fight almost every time. (The only time it's not a fight is when he's so out of it that he's not really aware we're giving it to him.) In the last few days he seems angrier about taking it. Maybe he wants to just mentally check out and not wake up. I don't know. He hasn't said so. The problem with letting him just be non-responsive is that he's weak enough now that it wouldn't take long until he'd be trapped in the bed and unable to get up at all, and I think that would be pure hell to him. That and he'd have to end up in the hospital due to dehydration, etc. Bleh.

Hugs hugs hugs hugs hugs!

Thanks ... he's been barely with it enough to get him to eat some and drink at least.

Even though he's had both doses of lactulose, fairly early actually, today, he's seriously loopy tonight ... tragicomedy moment, we've been in the bathroom for a while, trying to figure out what he wants, but he doesn't seem to know, and he won't sit down or lie down and he keeps walking into the bathroom ... he starts to pick up a razor, which neither of us thinks is an awesome idea ... mom asks if he wants his teeth brushed, he nods, so she tries to brush them, but he won't fully open his mouth

So I'm sitting here doing nothing in particular, mucking around on my computer. My mother was showering and I thought my father was in bed. Then I think I hear a frantic voice, which makes no sense. It stops for a bit, then I think I hear it again. Just in case, I go peek into my dad's room and nope, he's not there. And yup, from there I can hear my mom more clearly, and as I head into the master bedroom, I'm hearing her going, "That's not the toilet! That's not the toilet!" Uh oh. So I hurry into the master walk-in closet and find her frantically trying to stop him from shitting on a little stool in there. He's PISSED OFF because he thinks she's trying to think him from using the bathroom, which I suppose technically she is. It took the two of us together to haul him out of there and get it through to him that THIS is the toilet. Yikes.

Oh Chris, that's both funny and sad all rolled into one. Such is dementia.

*Hugs* Chris

It's not dementia. It's hepatic encaphalitis (might not have spelled that right). With the liver cancer and hepatitis C his liver can't filter the ammonia out of his body properly. It builds up and overwhelms the brain and makes you hallucinate, get confused, and otherwise be crazy. The lactulose he takes binds with the ammonia in his body and causes him to poop it out. It also becomes less and less effective over time as the liver deteriorates and the ammonia levels get higher. That's what's happening now. :/

The hospice assistant came out to give my dad a shower and a shave. He's been so difficult with us lately and he was a saint for her! She has a wonderful, playful manner and I think that must help. He probably also likes that he gets clean when she's here and feels more human. She comes 3 days a week (or offers to come 3 days a week, if he's not doing well a particular day we might tell her not to come). She also said that he's one of her easier clients (not that the others are difficult on purpose). I don't think she was just trying to be nice. Watching how well it went, he very well might be.

So glad to hear that things went well today, Chris. Sending good intentions and prayers your way...

I hope you guys can keep your Dad upbeat, Chris!

It's kind of an hour by hour thing. Last night he was incredibly confused and needed to go to the bathroom, and it took us an hour to get him onto a toilet and going. He was convinced that the bathroom was somewhere else (who knows where) and that we weren't letting him get to it and use it. At one point we had him sitting on a toilet and he didn't believe us! Then it took a while to get him settled into bed, as he kept saying he wanted to sleep but not wanting to actually go to the bed. Apparently after I went to bed he threw up all over, poor thing. He'd mentioned feeling sick earlier so my mom gave him a nausea pill but sometimes one isn't enough. This morning he's non-responsive, but he's so out of it that my mom easily gave him his lactulose using the dropper like one of the hospice nurses taught us. Hopefully that will help.

Chris, you have so much more patience and stamina than I ever could manage in the same situation. My heart goes out to you and your family.

This is going to sound strange, but I was so sick with certainty that I couldn't handle this, and I just kind of ... have. It's not fun and certainly not a bed of roses, but I have. My dad's still non-responsive. My niece and I helped my mom get a diaper on him, that was a new experience. I guess this is trouble taking compliments. I just don't feel especially strong or anything like that. Just putting one foot in front of the other.

It doesn't sound strange to me at all, Chris. Many of us don't know what we're capable of until we're in a difficult situation and just deal with it! For some, it often takes the observation of a third party to point out how strong/brave we have been. To the individual concerned, they are just doing what needs to be done. Keep up the excellent work, you'll come out of it a stronger person for the experience.

Thanks. Last night was a trip and a half. My dad woke up JUST enough to want to get up to go to the bathroom, but he was WAY out of it and something about the delirium had him walking in a very strange way that required all 3 of us (my mom, my niece, and myself) to get him where he needed to go. Let's just say that things happened this time that we'd rather not talk about, LOL. I'm exaggerating a little but not by much. It could have been far, far worse. Mom had the senior care people come in today since she had the day off from radiation (everyone does, they're working on the machines). We had a whole 4 hours to run around and do whatever we wanted. Got her some stuff she was looking for, got me a belt and some sunglasses, had a nice breakfast, and picked up a nice lunch on the way home (man I LOVE honeydew bubble/boba tea). That was nice.

I'll join Becky in applauding your patience and fortitude. I hope that through all of this he is not in pain.

Don't sell yourself short CW. This is tough stuff you are going through. It's just what you do for the people you love. They would/could or did do,the same for you. That is the beauty of that kind of love you don't think about it you just do it and it doesn't feel like a sacrifice. At least that how I look at it.

Thanks guys. No, he has the occasional temporary pain but he's not in serious or constant pain, which is a huge blessing. Went out with a friend today for some sightseeing, then went to her place to play with her menagerie (dogs, cats, rats, snakes), which was a fun change of pace.

So I'm home in BC for perhaps 2 weeks (when DH's sling comes off). My father has been non-responsive for 5 days now, occasionally eating on autopilot when yogurt or oatmeal is touched to his lips. At one point my brother picked him up and put him on the toilet because it's imperative that he goes to the bathroom to flush the ammonia from his system. That worked, but my brother's the only one in the family that's physically capable of doing it. From there, there was more feeding, and my family gave him more lactulose than they ever have (which is completely allowed and recommended, you just keep raising the dose until it doesn't work). Apparently 2 hours later my dad, uh, "exploded" in his hospital bed. When I spoke to my brother he was at the store getting new bedding, heh. Is it bad of me that I'm really glad to be home at the moment and not having to participate in the hours of cleanup that caused? Now they'll definitely be using disposable diapers, etc. This is the first time my father has gone in his bed. Just another part of his decline. *sigh* I might have to go back before the 2 weeks.

It's tough Chris, but you know things are going to get progressively worse. I know I couldn't watch my father deteriorate like that, so don't feel bad that you're not there at the moment. I'm sure you would prefer your final memories to be of your father as he used to be, and he would understand you have other responsibilities too, even if he couldn't communicate it to you before you left. My thoughts are with you and your family.

Before I left he was still conscious, and I told him I was going home for 2 weeks to help DH post-surgery and would be back. He definitely understood me. He hasn't been conscious since that. :/ If he passes while I'm gone I can handle that, it means he'll be free from the nightmare. I'm mostly concerned about my mom needing help.

*hugs* It's definitely a tough situation to be in. It's hard to see people we love going through those things, whether they are aware of what's happening or not. And it's even tougher to watch other loved ones having to deal with the day to day down and dirty stuff.

There never seems to be a good way to lose a loved one - and you have a never-ending supply of hugs from here!

Thanks guys. It's nice to have a place to talk.

So sorry CW. It's ok to take a break and look out for the other part of your family. Too bad the transporter hasn't been invented yet so you could go back and forth quickly taking care of both your special guys.

Aw, Chirs..it you're doing the best that you can. Keeping you all in my thoughts

Have pushed my trip back home up to May 2 ... the fun continues. At least this time since I can't get a ride to the airport (Rob won't have his sling off yet) the bus works as an option, so much cheaper than a cab.

Just got this message from my mom, a bit of improvement: "He rode on his walker seat to the bathroom...went. ..& walked, with help of (niece), back to bed."

That's good news. He's back to being aware of his surroundings. Are you still going back on May 2 or going to wait a few more days?

Still going back on May 2.

So, I texted my niece and asked how my dad is doing ... "He's okay but around 3 he put his head through the drywall. We called the fire department and they helped him up. I couldn't do it. Someone from hospice came to assess him and everything."

Jeez! That's scary. You are in my thoughts.

Did he fall or do it on purpose?

In the picture the hole in the wall is almost by the floor so he fell. He's been okay, and then non-responsive, and then partially non-responsive lately ... I fly out on Saturday.

All right, I've been here since Sunday afternoon. Today dad ended his 8 day non-responsive streak, waking up at 4am and keeping my mom continually running around until about 7:30, when she woke me up so I could shower and help her and then take over when she went to radiation. So far he's pretty overly ambitious, wanting to get up and go outside, etc. Instead, he tends to ask for things (coffee, orange juice, etc.) then by the time you get them he's falling asleep and doesn't want them. We've had to tell him that anything that involves getting out of the bed (which includes using the bathroom instead of the diaper) will have to wait until my brother arrives around 2. Mom and I can barely get his diaper changed between the two of us when he's out cold, let alone lift him, and we're pretty sure that he no longer has the strength to stand. My brother can actually lift him. Sneaking a bowl of cereal while he naps since my mom's at radiation so I'm on solo duty.

My mom's getting 2 different kinds of radiation. The first is general and pretty quick, about 15 minutes. The joke is that it takes longer to get your clothes off and on and all that than it does to do the actual radiation. The second is Accuboost. She's only getting 8 of those. You have to sit for 45 minutes with your boob in a mammogram vice while getting highly targeted radiation treatment. She got the last of the Accuboost today and has about 2 weeks left of the regular radiation. Apparently you get presents when you're done with Accuboost. I'd think the present is not having to get your boob squished for 45 mins again! She's got a new tote bag, a nice robe, and a gel thing to heat up and go around the back of her neck.

Yesterday about every 2 hours he'd call my brother over and tell something ... the things were "be strong," "be wise," and "Don't do it" ... my brother has the bad feeling now that dad's last words to him will be "don't do it" and it's going to screw him up for life. After 2 days of dad being kind of with it enough to speak and recognize us, he's back out again. He's got nasty chest congestion, you can hear it when he breathes, so we've got him on his side and the head of the bed elevated. Mom gave him some "secretions" medication that's supposed to help with the congestion as well. If that doesn't work, after talking to his nurse, we'll have to start giving him morphine (which is apparently for breathing as well as for pain). He didn't even make his usual protest noises when we rolled him over onto his other side. :/

Yikes! Hugs hugs and hugs!

Today dad got changed to "in transition" ... he's non-responsive and still not protesting when we move him, and his breath is really rattling. "In transition" refers to transitioning from life to death. It could be 2 days, 5 days, or a month. Due to the way his disease works, he could wake up again, or not. He also got his first dose of morphine today. I didn't know that morphine is used to make breathing easier. He has a catheter now too since even if he wakes up he can't get up and walk around. I haven't been expecting much of my upcoming birthday. So far that seems pretty smart.

Bro woke me up because dad sounds terrible and it might be time. He's breathing really fast and it sounds like through a mucus swamp. We're waiting on an emergency hospice nurse since we've given him all the medications we can.

I thought I posted but I guess it failed to post ... my dad's gone, he died at 12:04.

so, so sorry Chris

Chris, I'm sorry for your loss. I won't repeat the standard platitudes for this situation, while true, they aren't always helpful. Here's what helped me get through a similar situation: create a playlist/CD of his favorite songs for the memorial and go through old photo albums/scrape books to make a new one. This will be hard, but it will help to erase the last month and allow you to focus on more positive memories. Be prepared to laugh, cry, scream and shout!

I'm so sorry for your loss. :

My brother and I gave my mom her clothing store gift certificates for mother's day early. I took her shopping but we didn't find what she was looking for. At least it kept us busy and got us out for a bit.

Oh, Chris... I am so sorry to hear that I wish there was something I could say that would make it easier/hurt less, but I know it doesn't work that way. Just know that I'm here if you need an ear!

Sending hugs your way...my deepest condolences, Chris...

I'm keeping you in my thoughts and prayers, Chris. I know this might not bring you as much comfort as I wish it would, but at least your Dad isn't suffering any more and you can begin to remember him as he was before he got sick.

He was pretty miserable for the last couple of months at least, so I'm glad he's free of that. It's something to hold onto. I think we're all still kind of numb, here, though. Not sure when it's going to really hit us.

I'm so sorry for you loss, Chris. My thoughts and prayers are with you and your family.

So sorry for your loss, Chris. Keeping you and your family in my thoughts..

My condolences on your loss.

Thanks folks. It still hasn't really sunk in yet, but I do feel like he's free now instead of suffering, so there's that. It's been crazy with notifying people, making arrangements, etc. My mom's sister is here now and she's helping with stuff, including talking my mom off the ledge with thinking every dress she looks at is inappropriate, etc. The day I got here my period started (and I never stopped spotting). I'm now on about 6 weeks bleeding. Yesterday my period kind of stopped though there was lots of spotting. Today, it starts back again, heavily. GAH it's so fucking frustrating. I'm blaming the hormones for my current obsession with a local cupcake place. So far we've all managed to keep relatively calm and not fight, which is good. Bleh.

I hope you're okay and if not, I hope you'll be better soon. I've lost my own father a year and a month ago, but I don't want to tell you what to feel or anything. Just remember that a lot of people in here care about you.

*hugs* Victoria. It mostly hasn't hit me yet. Today is the service, a reception, and people back to the house, so I expect to feel like I was hit by a truck at the end of the day ...

Hope everything goes well today, Chris, stay strong. You'll get through it.

I thought I'd make a closing out post for this thread. I'm not sure my father's death has really hit me yet. That, or I'm just so relieved that he's free ... I suspect it's a combo thereof. My mom finished her radiation. Apparently you're still "cooking" so to speak for a few weeks after so she was getting more tired before I left, but seemed to be taking a good attitude about it and just resting when she needed to rest. My eldest niece is staying with her off and on through July so so she's not entirely alone, and my mom will be going to NYC to spend some time with my brother, too. Between that and her friends keeping her busy she seems to be doing okay. I hope we're not all keeping her so busy that she has no time to process, but I think she'd start declining invitations, etc., if she felt overwhelmed. My husband's still healing very well from shoulder surgery. He's already in physio, which is of course making things hurt a bit more because he's working them, but he's definitely loving the fact that somehow it all seems to be going right. I'm sure part of it is that he actually follows instructions and doesn't do stuff he's not supposed to do (not to mention he's been doing every exercise he was given even before physio). On my part, I'm still bleeding. I've had 3 full periods in May. My dr gave me some anti-bleeding meds for a week at a high dose but I'm not sure they worked. I'll give it a few days to see. They've already run out and the bleeding has continued, but maybe it takes a bit to get the full benefit. Depo provera (progesterone) is apparently not my friend, given the over 6 weeks of bleeding it's caused. So much for stopping my cycle to see if my iron/ferritin/hemoglobin bounces back! I've got a mammogram (due to mom's breast cancer) and a pelvic ultrasound (due to my bleeding probs) coming this week. Whee. It's okay to respond here but I'll probably do any future posts in another thread.

Geez, Chris, I hope they get your physical problems sorted out soon! I'm glad that your family seems to be coping -- here's hoping the long run bodes well for them.

Yeah it's been an adventure with my physical stuff. So much fun. I'm so glad that my mom's on the other side of the breast cancer stuff now, and that DH got the surgery he needed so quickly. It's a breath of fresh air not having to worry as much about so many people, so it helps give me more strength and patience for dealing with my own crap.