HospiceLand - The Book - First Ten Pages

July 2, 2008 - Stoughton

Last 5 balls of the 16th over when I'm called in to bat. Our side (batting) needs 2 runs to win. Unfortunately, we are down to me batting. I bat last. The Indians call me the "player of last
resource", which means I bat last because I'm the worst batter.

Last 5 balls and I'm at bat.

Bowler throws a wide. Run scores on that. So now I need 1 run on 5 balls. Swing and a miss. Now I need 1 run on 4 balls. Ball coming for the wickets but I take it in the leg for the team. We have no leg before wicket rule or this would've lost the game for us. So I'm at 3 balls needing 1 run. Next ball I take in the leg again - it smarts - was coming too fast - down to 2 balls needing 1 run. The wives of the Indians are mumbling and shaking their heads. You can sense the dread and doom and how did we let this game get away from us and how in the hell did it come down to needing the American to get a hit?!?!?

And then a nice off speed comes my way and I crack it between the fielders and we easily score a run. Much to the joy and disbelief of my team mates... there was joy in Mudville that day. Well, in Stoughton at least, as my team defeated our opponents and won the tournament.

All the next day though, I got to bask in the high fives from my team at the coffee break zone (as well as compliments from the good sport opponents) with cries of "Man of the Match" and lots of back patting, which is basically why I play sports. It's the afterglow I want. I love this group of Indians. The very nicest group of people I’ve ever been associated with.

Today was a good day, better than my last time playing cricket in mid-June.

Long Weekend Starting Friday June 19, 2008 - Stoughton

The Indians had arrived to play cricket and I was on the cell phone with my sister. It was the Friday of the Relay for Life, our charity event we’ve been involved with for many years because of Alexa’s childhood leukemia; she's been cancer free for over a decade now. We’ve been the captain of my work’s team at the Stoughton Relay since we were Nelson Industries and I was even co-chair of the event (sort of) a few years back. Now I was on the committee but trying to just focus on the family having a good time at the event with some focus on a tent we were calling “The Memory Garden”. We were playing cricket under the lights as a form of entertainment. Cricket is a sport I’ve taken to over the past few years and had been playing a few days a week at the nearby softball fields with mainly Indian contractors who work (like me) for Cummins and live nearby. My sister called my cell and was letting me know that mom had not felt well and that they “shocked” her with paddles a few times and sent her home but the next day (today) she still didn’t feel so well. So she was now in the hospital.

I not only had this Relay for Life overnight event but I also had the installation work up in Fridley, Minnesota, that we were going to do over Saturday night. It was a project I’d been working all year on. The biggest project of my eighteen year work life probably. It was going to take down power to an entire section of the facility. The plan was to do the Relay and sleep a bit during the event and then get a few hours sleep at home before driving up for an all-nighter in Minnesota at the facility Saturday night and hopefully to bed at the hotel sometime early Sunday morning. Then I could get some sleep and leave for La Crosse to see my mother Monday afternoon. My mom was on the phone telling me she would be fine and that I should do my event and my project. It was on the way to drop down to La Crosse on the way back. Maybe she’d be home by then? I was still trying to fathom how they can shock a woman and send her home?

My sleep at the event turned into my crawling into our Toyota van and laying on the floor to a pattering of light rain. It wasn’t sleep but it was a rest. Or it was a rest once the rat terrier I had in the van with me settled in and we could enjoy the relative silence of the rain. I wasn’t overly worried about my mom. She was in her later seventies but she was strong. She was still driving. She came to visit us a few times a year and she drove often to Green Lake to be with my aunt and uncle in the summer. In fact, she was just about to go driving there when she felt funny and went instead to the hospital. Where it seems they shocked her a couple of times and then let her go back home. I had to assume that was a fairly normal thing they did now although it didn’t seem normal at all. It made me think of my dad and Fathers Days and that his death day had just passed and how I wasn’t looking forward to the drive up to Fridley, nor the work to begin with and that the mom thing was just too much. That certainly, my mom at least, would turn out ok and when I came home Monday or even Tuesday that things would be going right again.

But it didn’t turn out that way. The job up in Fridley went well but ran long. There was way more cleanup and old wiring that needed to be pulled out than any of us expected. It was probably another $5K in work. The job was contracted so they couldn‘t charge us any more for the additional work but they were balking. Time was a major issue. To do the job right, to have the proper air flow and cooling - the crap wiring needed to be pulled before it could all be replaced. The team went to work on it. I convinced the contractors that they didn’t want to do some cobble job which would reflect badly on their workmanship. They wanted to do it right too and didn’t want to reschedule. We just decided to push on and get the job done.

But the job ran beyond 8am Sunday morning and wasn’t done until 8pm Sunday evening; and it was running great. Although there had been a few communication mishaps and the job did run twelve hours long, it was a success. My boss eventually did give me some praise for the work but that night her words of “we’re going to take a black eye on this one” was her focus - commenting mainly on a few minor misses over the hundreds of major successes. It stood out against the work we’d just done for Relay, where basically my family and one guy at work, Vince, raised $10K in the name of the company. All of this while my mom was in the hospital with heart issues and I was working like a zombie on a few hours sleep to complete the Data Center work in Fridley. I was a tad bitter and bitter isn’t something I do much of. To celebrate, a co-worker involved in the project and I had a nice big steak and a few beers. Somehow I managed to stumble to my hotel room and the next thing I knew I woke up sprawled across the bed with my clothes still on. It was Monday afternoon.

When I finally arrived in La Crosse Monday evening and walked into the hospital room to check on my mom - she looked just like my grandmother, her mother, before she died. Her face was shallow and ashen. I was not ready to see that. It felt like she was on the verge of death then. Over the course of the next few hours her heart did actually stop and they shocked her some more. After some tests and rounds of good news and bad news my mom ended up having a pacemaker/defib device put in her. There was talk of her living a normal life and of driving again. We heard stories of other people doing well with congestive heart failures and devices. We thought my mom would do the same. We knew she was strong although we had no idea what was to come and what strength really meant. My mom left the hospital to return to her home as did I and my sisters went back home too. Although my mom couldn't drive she functioned on her own back at her house. My cousins checked on her daily; life seemed to be moving back to normal again. I figured in time she'd be driving again and this was just a blip in the road.

July 7, 2008 - Stoughton

My Mother-in-Law is leaving for good. She moved in along with her cat about 18 months ago. There had been some kind of falling out with her and her son who lives over in Minnesota. Not everyone gets along with everyone in my wife’s family. With twelve children I guess that isn’t all that odd or uncommon. The alliances amongst those groupings though shifts and realigns with time and “events“. We often feel like we are Canada as we get along with all of them - at least most of the time. Jeanne’s mom has jumped around from child to child now for most of her life since the divorce. It seems she was screwed out of her mother‘s house by family politics. Most of which I didn‘t understand at the time, nor now for that matter. My wife had been worried about her mother and where she would live for over a decade and so eventually the time came and after the falling out with Jeff she came to live with us. But now suddenly she is going to go back to La Crosse. We are very excited. There is a room full of boxes forming down in the living room. I think I might actually mow the lawn. We have a guest room again! Soon the smell of vinegar will no longer hang over every corner of the house. That woman loved to use vinegar as a solution for everything. I swear, we saw a book titled “1000 Uses for Vinegar” and she probably could add a few more at the end of the book.

July 8, 2008 - Stoughton

The MIL has left the building. My building. A truck worth she took out of the room... couldn't take the big ass TV either. It was ours I suppose. My wife found it just sitting on the curb of a house with a note that said “sound not working”. But we found out it was just if you wanted to hook it to a stereo or something. The TV speakers were fine. It was a really nice 32” TV too. I thought my mother-in-law would take it. But she couldn't - no room. And then she was gone and now she's not coming back. Ever. The sweet pleasure of this day is overwhelming. It's not like she was a horrible burden but our life was kind of on hold this past year and since she was always home there was hardly any "alone time" in the house.

Luckily, she left on good terms with my wife versus her pattern of starting a big fight with whomever she just left living with. She says she hates hugging, that she has a skin issue that feels “pin-like” and makes hugging uncomfortable. Considering what a tough old broad she is, I had a hard time believing that. But I did show her the fist bump that the Obama’s made famous so that she could do that instead in place of a hug. She fist bumped all of us quite a bit. And she did make me a really nice supper the other night. And she did thank me for letting her live with us, etc. I do believe she gave or my wife took some real hugs from her as well.

It will take a tad of adjustment... I'll miss not having her to talk with on weekends with coffee on the deck. I liked that. And she did make the garden look really nice and always did the dishes. With my mom sick it makes my wife worry even more about her own mom.

Hmmmm this is buzz killing my joy.

It wasn’t a good fit here with us though.

About every 3 months she reduced my wife into a crying wallowing heap of misery... usually when she sensed my wife was really vulnerable and could use a shoulder or a mother or something - then she attacks like the wife is a fly in her web. I don’t know if it is intentional or just a dynamic of dysfunction and after watching for awhile I just didn’t care. It was hard watching a mother and daughter not be able to get along. Especially, against the backdrop of my relationship with my mom which is so warm and tender. Theirs is a constant struggle. A relationship lost in so many unspoken moments and what-ifs.

They had a fight a few weeks back while my mom was just starting her congestive heart failure and we'd just done the American Cancer Society Relay For Life event which is emotionally and physically draining. We both knew she had to leave, that it just wasn't working out after a year. I guess she saw it too or maybe fates just aligned… but all of a sudden her brother asked her to move in with him and help him out with his grandkids and house work etc. And she's been wanting to get back to her hometown, so she went back with Uncle Tom to La Crosse.

July 16, 2008 - Columbus, Indiana

I'm at a bar in the Indigo Hotel in Columbus, Indiana and this place is like out of Alice & Wonderland. All over the place they have reminders with haiku messages... Happy Rasta, one of my Internet list group friends I’ve conversed with for over eight years, would love it. He’s the Master of the Haiku.

At the bar it says on my napkin:
{A HAIKU FOR YOU}

Relax, ponder the
imponderable question:
one olive or two?

---------------

It is right across from where I'd normally have to be - a walk away. I love a walk away. But my training was moved to farther than a walk away. I hate farther than a walk away.

Checked out the local cricket game here... but they didn't ask me to play. Bastards.

Drinking beer now, may as well. The bar is cool, the price is free and I never sleep well the 1st night anyway when on the road.

July 17, 2008 - Columbus, Indiana

This hotel rules... for a book in the drawer where you might find a Bible you find "The (Fabulous) FIBONACCI Numbers" by Alfred S. Posamentier and Ingmar Lehmann.

Unreal. I think I love this hotel chain. Why can't there be more of this out there? A hotel willing to step away from the mold yet maintains all the basics while giving its patrons a unique hotel experience. Can’t wait to come back.

August-Early October, 2008

Over the summer the focus returned to the upcoming presidential election, work around the house, work around work and it seemed like maybe my mom with time would resume a semi normal life. We thought she might even drive again. She was staying alone at nights and resuming some of her normal routines. Some of those routines we discovered were not so good. Mom was on a variety of medications and took a lot of vitamins. Some of the meds were from before the pacemaker and a boatload more were added.

Our main focus was on Obama and politics, while back in La Crosse my mom was struggling to eat, get around and take meds. Sometimes, usually Roxy my cousin, would find my mom disoriented and walking sideways in a “crab walk”. Over the fall it became apparent that my mom was going to need care and constant supervision. We started by the middle of October to make plans for mom’s care. My sister Pam decided she would be the one to come live with mom. The way my mom was looking made me think she couldn’t last until November when my sister would arrive - until the end. Which, when the end was? No one seemed to know.

I believe Roxy and my sister Peggy started the involvement with Hospice Care. I was pretty upset with the Universe at the time. It seemed like a real raw deal my mom was getting. I know all mommas’ boys feel this way, but my mom was the sweetest most inoffensive person I’d ever known. If there was a heaven and if she wasn’t going to it - none of us are. To go out from being so dependent to needing her basic needs ever increasingly taken care of for her by others was an incredibly difficult transition for my mother. The mental strain of that transition was making life difficult for my mom who had been the stereotypical housewife of the 50’s for as long as I’d known her. It was a heartbreaking time. If my mom was going to die soon, I was determined for the three weeks (of FMLA leave) I was going to take before my sister arrived to make her days bright. We weren’t going to wait to die. Every day we woke up, we were going to live.

October 22, 2008 - traveling through La Crosse on my way home to Stoughton

I stopped at my mom’s house on the way back home to Stoughton. I’d been up in Arcadia for work and La Crosse was a quick stop along the way. My mom looked pretty good but weak. She was dressed and looked nice. I heard she was “showing off” and had used up quite a bit of her energy to look nice for her son. Including to clean up around the house. She was a bit miffed because she had missed her soaps again. I wasn’t much help because she still uses this ancient VCR that you need to set daily. I try to stay clear of it. I’d made arrangements to come live with my mom for three weeks. My sister Pam is going to come and live here for good after that. Until the end I mean. I got a taste of some of the anxiety and apprehension my mom was battling. I didn’t look forward to the VCR games. I was surprised and pleased however at the new order that was happening in the house with the addition of InHome-Hospice. But I had to wonder what three weeks away from Stoughton would be like.

October 25, 2008 - 1:54am - email to list group - La Crosse

My mom is dying. Probably, this week – it is hard to tell. I’m here for 3 weeks now. She's mentally all there but very weak. They put her on oxygen today. There is a big oxygen making machine that is loud and generates quite a bit of heat in the next room. She didn’t look so great with the oxygen tube sticking under her nose. When I came home she was crying. She's just accepting that she's dying. I'll understand if you don't boo hoo. You might have some similar stories in your own past. Circle of life, just one of those times. It's pretty rough to watch. But I'd rather be here with her going through it than away. She’s coughing into the baby monitor right now. Good times.

> ==================
>
> You have my sincere sympathy, for what that's worth (probably not much.)
> Both my parents are still alive and healthy - knock on wood - but they're
> pushing 80 and it's just a matter of time until I have to deal with it. I just hope
> I can hold up as well as you seem to be.
>
> HR [Happy Rasta]


JB:

Yeah, lucky me - I'm highly functional in a crisis. I have an ability to maintain a good humor (with mom in this case) during hard times. We have some pretty black joke days. I watched my mom watch her mom die of Alzheimer’s to the point she didn't even know who my mom was. She languished for years. My mom told me to put a pillow over her head and smother her if she is there. Her sister ,who is younger than her also has Alzheimer’s and hardly knows who anyone is. My mom missed that, thankfully. My mother’s sister, Eloise, is healthier and probably will live 1-5 more years. I'd take this over that any day. My mom when not exhausted is still sharp as ever - although she is better with discussions about things over a year ago than what has happened since June. It's hard but we've had a lot of really nice moments. Her birthday was one of the best days I'd personally had all year.

Both my sisters were here and both of my kids. My wife stuck around. She has 12 sibs here and can be pulled to and fro between them all when we are home. She has a sister she is close to and another who she had been close to but that sister is lost in drinking, drugs and depression now. The phone rings constantly when we get to La Crosse. Usually, followed by a “Jeanne! It‘s for you!”

I put up a wire fence for all of our dogs to run around in the back yard since we visit so much now. I started out with more help but I’d gotten a tad bossy after doing some projects with my buddy, Karl, who likes to boss “the help” around. I’m usually helping as I’m not all that adept with building and “projects”. I took some FMLA and I think I'm here for the duration now. I can't leave her anymore. Too much adjustment from normal to this. I can't see how she can last till mid November when my sis gets here. But hospice says they do it all the time. As long as she is in minimal pain and has sound mind then it isn't so bad.

I'm such a momma's boy. She really needs me now. There really isn’t much of a choice. It isn't about anything honorable. It is the only decision at the moment.

October 25, 2008 - 12:30PM - Stoughton - to listgroup

> Just a little emotionally low at the moment. I'm in pretty good
> spirits I'd say considering. I'm going to be living in La Crosse
> now until mid-November away from my wife and kids. I've been away
> from them 6 days in a row at most before. Wife is mopey but knows I
> need to stay.
>
> This is about what you can expect to me for awhile. Not that bad
> I'd say. You people will just have to deal with it or ignore my
> hyperbolic posts... whatever those are.
>
> jb
>
>
> ------------------------------------
>
> My heart goes out to you, and I empathize big time.
> Wish I would have stayed in California with the folks,

> so your mom is super lucky you are there to help out.
> But lucky for me, my hub and daughter, know that I have to live
> a bicoastal existence from time to time, and although hub finds it
> difficult now that we have a monosyllabic teenager, he also knows the time
> will come when I have to fly over for more than a two week stay.
>
> K
>

That sounds hard but I imagine you adjust and we will adjust. I have Indian contractor friends who have been here in the states for 1-2 years and for some their wives and kids are back in India. It is very common for them. This guy, Narayan, just had his wife go back to India to finish her degree and he’ll remain here until next year. That has got to be rough. But when I say that he seems a tad confused. It is just done. It is heart wrenching difficult to be away from my family. Every day I’m here I realize this more.

I need my peeps (my wife and kids). I hope I hold together. I could be more ranty and snappy here. The Internet is where I vent. Hopefully, I don't cross a line or something. That has been my way in the past. But I'm much improved these days I'd say, I‘d hope. At 45 I'm still trying to
grow up.

October 25 - 1pm - to list group - La Crosse

Cable guy just came!!!! We get actual TV channels now! Not just 3 broadcast, PBS and 8 home shopping networks. And I think I might convince my mom to get the Digital Recorder and drop this effing outdated VHS/DVD thing she has. Her TV needs the right combo of ON/OFF, DVD/VHS and VHS/TV to work right. Or if it is recording... forget about it. My mom hates change though. And she's had to adjust to a lot of changes. But I think that would be one she could handle. She keeps missing her shows. With the DVR we can just pick her favs and let it do its thing. My mom has 10 times the money I do but doesn't want to touch it. Shit, I'll pay for the DVR. It's like $10 more a month. And if I'm here I can quell some of her anxiety.

October 25 - 3pm - listgroup

> Death SUCKS.
>
> Don't try to tell me there's a god who created THAT.
>
> HR
>

I have a faith of sorts as you know but it is tested at times like these. After my visit two weeks ago I bitched out loud to my dad (dead) if he could hear me. Asking what in the hell has my mother done to deserve this painful end? Either take her while I'm here now or give her some relief. When I got here hospice had taken control. The support system was very good. We hired this woman who is an angel. She is a former hospice nurse who can cook yummy salt free meals and allows me to come here and just be a son. It was night and day. Kind of a dirty trick if dad had something to do with that since it was already in place before I arrived last Wed. She's still in the 4-6 level of pain most of the time. Cries a lot over her own death. But she's here. We laugh. I'm not ready for her to die. This is okay. For now. Sort of got the Grace I bitched about. Most likely a coincidence but it makes a person wonder.

Again, I say that I have learned some of my best lessons and have been the most human during times like these. I don't like them but I don't fear them. I accept it for what it is. The calm my mom feels when I'm here is unmistakable. My sisters can sometimes agitate her with their concerns and worry. I make "inappropriate" jokes with her about her death. They hide from it. She knows she is dying. She wants to talk about it. She wants to cry about it. She wants to see me cry about it. I’m understanding what she went through with her mom only I'm thankful for what I have. My mom knows who I am. When that ends we start the morphine. I know what I've promised her. And for her dignity I will fulfill that. No pillow over the face thing though. That ain't gonna happen. My mom is like, "when the time comes...." and I'm like NO MOM - NO. Your wishes will be honored but I'm not putting a pillow over your face and ending it. "Chicken shit", was her reply. That's my mom.

October 25, 8pm- La Crosse

> jb...when my mom was dying, she held on for DAYS past the
> doctor's expectations...I finally crawled into the bed with her
> and told her it was ok for her to go and be with daddy...that
> we'd be okay...we'd miss her...but it was ok to let go....she died
> peacefully the next day....
>
> If it comes down to it and she is holding on to this world with all
> her might, give her permission to go...
>
> Still in my thoughts and prayers......

Thanks. I think my mom is a bit away from that. When I got here I thought maybe it would be soon. We had a really good day today. She's eating better. The oxygen is scary but she doesn't NEED it - it is to help her. It's like a pill really with no side effects. She is just sleeping at night with it.

Sleeping at night is our biggest battle. If she don't sleep no one sleeps. I have a feeling by next week. When she naps... I'll have to nap.

jb

October 26 - 8pm - reply about mom’s condition - La Crosse

My mom has congenital heart failure since June. She has a pacemaker with defib in it. We want to turn the defib off now. She was looking pretty bad last Wed which may be when I wrote this. The plan was I'd come back this weekend and stay til next weekend and then some family and then my wife for a week... sister moves in full time here Nov 17. When I arrived this Friday she looked pretty bad. She's been doing much better since I arrived. She was friggin' nuts today. She cleaned her room, the kitchen, we decorated the house with the Halloween stuff... she over ate. She salted her dinner this afternoon. No doubt tonight is going to be rough. Maybe not. Maybe she'll sleep well tonight. Nights are not good. She rants. I have a baby monitor but haven't figured out the magic setting that can let me not hear the "please Lord give me strength" ranting but could hear her if she calls for help. I stayed over last Wed night and I guess she hollered at the top of the stairs "John I'm dying" and I slept through it. She called the hospice nurse and took a Tylenol and went back to bed. Last night she couldn't sleep so we watched TV from midnight until 2am and then I gave her a Tylenol on an empty stomach and she wretched for 10 minutes while she ate some crackers. I won’t make that mistake again. Then she woke up today full of energy. Man, I hope she didn't overdo it. I'm really tired. I need a night's sleep.

October 26, 2008 - 9pm - list group - La Crosse

> In case they haven't told you, a magnetic field will stop the defib. I
> do not know what this does to defib/pacemaker units, but it makes the
> ICD's go into a sleep state until the magnetic field goes away. Some
> people with ICDs carry a magnet in their pocket, just in case the ICD
> malfunctions and continuous shocks them.

This is what freaks us out. She doesn't want to be shocked. I'm not sure how they turn off the defib but leave the pacemaker alone. I think it may be possible with a remote control like device they have. They used something to adjust her pacemaker a few times already. Her doc is coming tomorrow to see what we can do for a good night's sleep. Maybe she should take her morning pills at night because she takes a nap from 9am-10am and then again in the early afternoon and she sleeps like a baby. No rants. Why can't she get 6-8 hours of that at night? She's tired now but the back pain is starting. Well, no shit.... she ran around like Supergirl all day.

And damn I'm tired. Power nap might be my new best friend.

October 26, 2008 - La Crosse

Mom feeling very good. Too good? She cleaned her room and the kitchen and loaded dishes into the dishwasher (all hunched over it too). Took two short naps before 3pm. She read on the couch while Jeanne and I did Halloween decorations. My mom has a ceramic cat that I never really noticed before and she decorates the cat with different outfits depending upon the season or holiday. My mom directed Jeanne where the Halloween outfit was and then my mom dressed her stone kitty in its witch outfit.

She just eats small meals all day. Likes “wacky cake” which seems to recharge her. Too much as it usually drives her into some kind of cleaning fit. It makes me nervous and I find myself hovering like I need to spot for a gymnast walking on a balance beam. And this in turn makes my mom nervous and annoys her.

Heartwarming day. Praying it isn’t too much and we pay for this with more restless legs. I think the leg issue is related to needing more water. Mary is bringing some kind of salt-free hot dish. Mom is very bad at taking it easy. A good day overall but fearing it will make for a tough night.

October 27, 2008 - 7:16pm - list group - La Crosse

> JB...what is wrong with your mom, if you don't mind my asking...
> aside from the fact that she gave birth to you...
>
> HA!
>
>
> I'm kidding!
>

Well what is really wrong with her is she doesn't listen worth a damn. Went on a cleaning spree all day yesterday. Was wiped out most of today but then got some energy and went crazy loading the dishwasher. New meds for sleep tonight - hope they work.

October 27, 2008 - 7:24pm - La Crosse

My mom's basement toilet glugged now and then – it needed to be looked at. The plunger piece that lets the water from the top tank into the bowl had a break in the seal so water was constantly trickling. So, I went to get the plunger piece. They only sold it with all of the assembly but it was just $5 so I got it. Then I realized that I would have to replace the whole assembly - not just the plunger part. That required unhooking the entire top part of the tank. Have I mentioned that I'm not actually all that handy? I did get it all off and put the new stuff in. My hands were friggin black from the old broken down plunger. So I put the top tank back on and tighten it up and let the water back in while singing to myself "I'm the man. I'm the man! Whose the man? I am! I AM the MAN!!!" - as it started to leak from the bottom of the tank all over the floor. It took a bit of rechecking some seals and tightening up some screws but it seems like it doesn't leak now. I guess if it does she'll have to call a real plumber. Not that she'll ever see it. I doubt she'll ever be in the basement again.