Rollercoaster back on the way up...

Well, it's one in the morning - Sunday night.  The typical can't sleep. But I have tomorrow off and have nothing but a relaxing day planned.

It's been a couple weeks since Luther and I had a whole day off - no appointments, no work, no engagements.

I had a moment of melancholy tonight.  A two minute cry resolved that issue.

Now, I feel a little lighter and am looking forward to hanging out with my guy tomorrow.

The goal tomorrow is to just enjoy the day.  No worrying about the next day.  No thoughts about what happens next.

I might even cook something.  It feels like a meatloaf kind of a day.

Things too sad to read

I belong to many ALS support groups online.  It helps to be connected.  I've talked about the side effects of being that connected before.  Do I want to look in to our future?  It's very very difficult to hear what's going to happen.  

Sure, I know everyone's ALS path is different and yet, eventually, the end will be somewhat the same. The decisions we face, the guilt, frustration and exhaustion we feel, the extreme sense of duty and love that grows each day - these are the same although might be expressed in different ways.

Do I stay subscribed to these groups?  Do I continue attending support groups?  I think yes.  As hard as it is to read, to hear, it's good to know there are folks out there who've been through this.  That helps.

Here is an excerpt of just one of the messages posted on just one of the groups I subscribe to.  

Original post from a woman who took care of her dad:

It's been two weeks since my dad passed away from ALS. I stopped working to be his caregiver for the last two years. I feel completely lost. Has anyone out there had to take their loved one off of the ventilator? The guilt has become overwhelming but he no longer wanted the trach or life support.


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

Each ** paragraph is just one person's reply:

**  We are at one year today since losing my brother. My sister in law was at his side. They had made decisions and she stuck to his wishes. She's one of the strongest people I know.

**  So sorry for ur loss, I lost my mother in 2011 after her battle with ALS, as the child/caregiver to my mother when she passed I too was full of guilt, wondering what I could have done more of, or how could I have supported her more, especially since she passed away just half hour after I left her, I focus on the fact that she is no longer suffering, and that she is at peace now... Time doesn't heal the wounds any, however learning to live again does... My mother choose not to have any life sustaining measures taken, so we honored her wish, which is what u done as well. My prayers are with u!! Hugs from ur ALS family!

**  What I have learned doing hospice work, is abide by the patients wishes and never doubt yourself or your actions. I now have to do this with my husband who is 49 and has a hard time talking, swallowing and at times chokes.

**  Yes my dad was on the vent. The last week was so horrible. We were suctioning nothing but blood from his lungs. He was starting to become out of it mentally. That Friday he was completely gone mentally. He would go through all of the facial emotions but would never focus on us. It was like he was seeing right through us. When we would walk by and the lighting in the room would change it would somewhat get his attention but he still wasn't there. He was grinding his meet so bad. That evening we called his doctor to come over. He asked my dad a fee questions to which he answered yes to even though he should have answered no to one or 2. We went out of the room and decided to give him pain meds to make him comfy. Then added in high doses of Ativan to calm him and slow his breathing. Once he was calm and pretty much sleeping with his eyes open, they began to turn off his oxygen and turn down the vent. The entire time this was happening it took all I had not to yell stop. But I knew it my heart that he would pass very soon and would suffer. Once the vent got to a certain point it was switched to automatic mode and within a certain amount of time, I don't remember exactly, it slowed his breathing until it shut off. He was no long able to breathe on his own, the vent was keeping him alive. He passed away peacefully with his family surrounding him may 10, 2014 at the age of 51.

**  You gave him peace, my sister had to do it for my mom and sister. 
She feels like you, I feel like she was an angel. I hope that she would do it for me as well. 
Hugs

**  Hi, I'm so sorry got your loss. I was my mom's caregiver and it is very natural to feel guilty. My mom didn't want any medical assistance so not being able to help with a ventilator was excruciating but I wanted to honor her wishes. I also left my job to take care of my mom. I spent 2 years after mom left us to write and write and write. It helped my mourn and heal.

**  My husband was not trached but I have guilt for other things...the 'sins' of a caregiver are overwhelming... Trying to keep your loved one comfortable as they die caused me enuf guilt to last 3 lifetimes... Why him and not me?!?! And endless other questions... 4+ years later all I can say is we do the best we can as caregivers and that is all there is...no right, no wrong, just our best...

**  My.husband refused artificial breathing. 
He died last January. 
Diagnosed 4 years ago.

**  I had to take my husband of 30 yrs off, it has been 3 yrs, and yes I still live with the guilt

**  I think as caregivers we always say why them and not me. I think that all the time she had more to offer this world then myself. My wife choose to not even get feeding tube. I feel guilt and thought she didnt want to stay alive cause she didnt want to be with me. Women are so much stronger then men are i believe when it comes to death but my wife had so much faith. Had hospice nurse and tell me i should go tell her its okay to leave. I feel guilty cause i couldn't do that i felt like i was giving up on her. This ALS is so nasty to watch it suck the life out of someone like it does. When they told my wife i didnt believe it thought something like cancer we could fight it together i kept looking for it to be something else i was in denial the home time. been over ten years and holidays seem to get worse every year. I pray all the time for my wife to come to me in dreams and nothing. Really stinks just hope i meet her in heaven someday.

**  My father was wide awake during the night in which he yelled and cried begging for someone to lift him out of bed to walk. Just sad.

**  Sorry for your loss, my mother on law refused any invasive procedures to extend her life. She was complaining of shortness of breath 2 days prior to her death and i gave her the choice that either I would drive her to the hospital sans oxygen, or the ambulance would take her. She went via ambulance and never left the hospital remaining steadfast that we complied with her directives. My wife and I spent 8 months caring for her as well as my father in law and our 4 children. The point it, do not feel guilty, it wasnt your choice and you dedicated 2 years, we did 8 months and that was stressful, but it is out of love that we sacrificed and no matter how hard it feels, i cant envision what they went through!

**   My husband died July 15-13. We were married July 15-1999 and had 3 beautiful daughters. My girls told me the day if his funeral, mommy we are sad and sorry that daddy died on your wedding day. I told them and I believe this to be true, God brought us together this day and separated us this day. Mommy is happy that your dad is no longer suffering and home with God. Take the days one by one. The pain is the same but the days do get easier.

My mom and dad

My mom and dad are awesome.  I know I've said this before.  But they deserve extra special mention.

This whole ALS thing is an extraordinary situation.  It's put us all in places we'd never thought we'd be.  Emotionally, financially, where we live, how we live!

If I back up a little, pre ALS, even pre Luther, my parents have always been pretty great.  They're all about family.  They lead their life by example.  They are true and honest, hard working and moral.  They are thoughtful, funny, patient and really really kind.

They are there for all us kids, usually no questions asked.  Maybe a few!  But generally no judgement.  For me, I've made some questionable choices and always, my parents have always been there to support me... not necessarily the choice, but to support moving me forward.

Fast forward to now.  To this terminal diagnosis.  It's created all kinds of situations we weren't prepared for.

We will be moving in with my mom and dad at some point in time.   It should've been by now.  We have a VA grant to get their house wheelchair accessible but moving through the grant process has been super snail like.  Part of it has been mis-communication between me and Luther, us and our grant advisor, my parents and the contractor, us not signing something correctly, etc etc etc   The grant process started in June.  Maybe earlier.  6 months later, the work hasn't even started.

My parents have ripped up their carpet, moved furniture, peeled wallpaper in order to get the process rolling.  And it's still not rolling...

Did I mention my parents are patient??  This was supposed to be interim housing.  Done by now, we'd go south for the winter, come back and live with mom and dad while we re-group, have the time to look for a new place, figure out what to do with my old place.  We're all adjusting.  I can only imagine their frustration and yet, we're all learning to accept the idea that this is what it is... we can only deal with and control what's in front of us.

Luther owns a mile-long RV.  It's still in Virginia.  A part of his past.  Sadly, a part of our future since there are payments still to be made.  My mom, in her zest for thinking outside the box, wondered if she contacted Ellen about our story, if Ellen would take the RV off our hands and use it to pass on to someone else?  Or as a celebrity dressing room??

Which got me to thinking about the Ellen show and how she honors every day people who do extraordinary things.

I sent in the following to the Ellen show, hoping I could get my parents in the audience or something like that.  You only have 1500 words to convince someone at the Ellen show they need to recognize someone!!   To date, I haven't heard anything.   So here's my own little tribute to my mom and dad.  I want to recognize how much I appreciate their support.  How much I love them.  How proud I am they are my parents.

Hi!  I'm Lynn.Thank you for highlighting the faces of ALS.  Your spotlight on this terrible illness is great!  

My guy, Luther, was diagnosed last November. We met a little over 2 years ago and jumped in feet first, thinking we'd have the rest of our lives to keep falling in love. A year after meeting, Luther got sick. It took almost 9 more months of testing to finally get the diagnoses. The "rest of our lives" took on a whole new meaning. 

But this isn't my story. Or Luther's. Instead, I'm writing about my mom and dad. Married 53 years, they are amazing. Every day, they show us what strength of character and unconditional love means. 

Luther and I can't stay in our house; it isn't feasible to make it accessible. So, at 53, I am moving back in with my parents. They are tearing up their home and my dad is giving up his man cave so we have an accessible place to live.

My mom loves your show!  She called with this zany idea I should contact you to see if you wanted this monstrous RV I inherited via marriage. Her words: "Ellen could use it for a blood drive or a celebrity dressing room!"  

That's not why I'm writing, but it got me to thinking...is there a cool Ellen kind of way to acknowledge my parents? 

I've told them a million times how lucky I am, how grateful we are. This illness is devastating and sad but time after time, my parents step up and keep us moving forward. It would mean the world to be able tell the world about my quiet heroes who expect nothing and deserve so much. 

Ice bucket updates...

Because of the money raised during the ice bucket challenge, the Minnesota / Dakotas chapter for ALS is able to eliminate the waiting list for the Durable Medical Loan Pool as well as the Hrbek-Sing Communication and Assistive Device Program.

How cool is that?

The Loan Pool is an incredible resource for people who can't afford all of the "stuff" required because of this disease.

Whether a hospital bed, bathroom equipment, walker or wheelchair, the Loan Pool offers people with ALS this stuff for free.

Just a little known fact:  Kent Hrbek's dad died from ALS.  Kent partnered with Larry Sing, an ALS Association board member who also died of ALS, to create the Hrbek-Sing program which provides equipment to people with ALS who've lost their ability to verbally communicate

More info:. http://webmn.alsa.org/site/PageServer?pagename=MN_8_PS_Communication_Program_Page

What an incredible gift!  Thanks to all those who contributed to an ice bucket challenge, who contributed to our fundraiser back in September and those who contributed to our ALS walk.  It's so great to see this money at work in an immediate way.

I hate rollercoasters!

I've re-read this blog from the beginning many times.  Some things have changed quite bit:  Luther's mobility, our attitude toward this, not working so much.  Others not so much and that includes this emotional rollercoaster.

Up, down, sideways, right side up, upside down. Fun, fear, anxiety --- sometime gripping the safety bar so tight I never want to let go, other times, hands up in the air thinking what the heck?  let's go for this ride!!

Over the last several years, we've been Oprah-ized to think of this thing called "balance."  It's on tv shows, it's in magazines:  how to achieve balance in our lives.

I think it's more a woman driven idea:  we can work full-time, take care of our families, do a little yoga and organize our closets.  Maybe do a craft in between there, make sure we get our five fruits and veggies and take the dog for a walk. This idea we can do it all and do it with a zen-like quality.

I subscribe to a magazine called Real Simple. I especially love how it gives me 20 different uses for a q-tip. Has it made my life Real Simple?  I'm dusting off my laptop keyboard with a q-tip as you read this.

I've always tried to contain my emotions.  Feelings = bad.  Especially the negative ones:  anger, sadness, frustration.  But when you wrap up those negative ones, the good emotions tend to get caught in that net, too.  Most of us probably do this:  we hold back our tears, we equate being angry with yelling, fighting or confrontation, frustration = fear or failure.

I've learned over the years it's ok to have these feelings and it's even better to let 'em out of their cage. Just because you get mad at someone or something doesn't automatically mean you have to pick a fight or roll your eyes or give the silent treatment.

It's ok to admit I'm frustrated and I've found that actually saying it out loud gives me relief and at times, resolution. Somewhat like this blog.  I get it out of my head, sometimes people respond or reach out and I find a new way to look at things. Talk about win-win.

So now, with this illness, with watching Luther deteriorate right before my eyes, geez louise, there is no balance.  It's exhausting.  One day I'm devastated, the next I'm resolute in my dedication to being positive and then it all crumbles and I become a robot.  This past weekend was robot-mode.  I hid inside the house and slept a lot.

I liken myself to this warrior, a knight in full armor.  Sword in hand, slicing through the anger, the frustration, my armor shielding me from the hurt and confusion.  The downside to wearing this protective gear is, at times, preventing me from feeling anything.  The good stuff bounces off the armor, too.

This armor is too heavy.  I realize it's ok to FEEL.  It's actually ok to sleep a lot.  I'm trying to put away the "shoulds."  What I think I should be doing, how I should be feeling.

From those dark moments where I get scared and think I can't do this - I simply cannot be everything for Luther:  cook, housekeeper, nurse, physical therapist, psychologist, janitor, cheerleader, driver, dresser, wife.  Sometimes I fail at most, sometimes I give a half-assed effort.  Other times I'm awesome!  From those dark moments come some really good things.

So this weekend, and actually after this whole week of processing a lot of negative emotions:  fear of not working and loss of a career, loss of identity, uncertainty about our future and frankly, my future once he dies, sadness I have to give up my 14 year old cat, frustration over the fact I haven't cleaned our closet (this is bigger than it sounds because it means I have to go through his things and decide what he'll never wear again).... after all this yukky blah junk, comes some good and some light.

We went to dinner with friends Saturday night.  I tried to find 1000 reasons not to go:  tired, cold, tired, sad.  But we went.  It was good to get out, have a fun night that was simply about having dinner and playing games and good conversation.

When we got home, we had this weird moment.  It was midnight and we just started talking about those negative things, how sad we were, how unfair this is, it's hard to even hold hands much less get up and go places.  It sucks he can't move and has to wait for me to do everything for him and he's in pain and feels stuck because he is.

But then, the conversation turned to how much we love each other. Which then turned in to how lucky we are.  Lucky we found each other.  Lucky we have people in our lives who are so supportive. Lucky he's a vet.  Lucky I can stop working to be home with him.

Riding this rollercoaster every minute of every day isn't fun and yet, if there isn't dark, there can't be light.  I have to get knocked down in order to appreciate getting back up. Realizing I'm not on the rollercoaster alone.

I'll continue to look for balance; I don't think my brain or my heart can take so much see-sawing.

Hopefully the one thing I can take away from this is it's ok to take off that heavy suit of armor, put down the sword and stop thinking of this as fighting the good fight.  Instead, it's just living life with as much light and love as possible.  Accepting fear and sadness, grief and anger as momentary emotions to feel and then let go.  Figuring out how to enjoy the rollercoaster.

Unsure what to call this

3 a.m. and I'm wide awake.

At first I was thinking about how confused I am.  So I googled the definition of confused and it was all about being bewildered, addled or disoriented.  At times, I'm a little bewildered at why Luther is sick.  Sometimes, when I'm trying to cook, I feel disoriented.

But this isn't the feeling I have.  I'm not confused about this situation.

I think I'm stuck.  Maybe uncertain?

un·cer·tain

ˌənˈsərtn/

adjective

1. not able to be relied on; not known or definite.

   "an uncertain future"

   synonyms:

   unknown, debatable, open to question, in doubt, undetermined, unsure, in the balance, up in the air; More

   • (of a person) not completely confident or sure of something.

     "I was uncertain how to proceed"

     synonyms:

     unsure, doubtful, dubious, undecided, irresolute, hesitant, blowing hot and cold, vacillating, vague, unclear, ambivalent, of two minds More

haha!  That might be it:  an uncertain future. Even more though:  "I was uncertain how to proceed."  I think that IS it.

It's a weird feeling.  I've never really been a take charge, have a ten year plan kind of a person. You'd think I'd be prepared for this situation --going with the flow.

This is so so so different.  It's stuck in limbo between planning and not planning.

Luther and I thought we'd live in my little house, keep working, save some dough and live happily ever after.

I'm trying really really hard to stay positive.  To look at the good.  I feel a little stuck in.... not the bad but the in-between.  Like if I don't move, I'll be ok.  If I hide out in the house, nothing can hurt us.  I know this is the most false sense of security.  At times, though, it feels safe.

Time to try to get some sleep.  Even falling asleep feels uncertain.

Happy Anniversay

Last year on this date, we got the official ALS diagnoses.

This was one of my first posts:

I'm scared of everything. 

We got the official you're going to die from ALS diagnoses a week ago. 

Many months ago, when we first heard about ALS as a possibility, we spent a couple days in disbelief.  My guy couldn't go home after work.  We went out and talked about death and plans and stayed up crying until all hours. 

Everyone told us to stop it -- stop googling info, stop scaring ourselves.  When the guy told the doctor at Mayo it felt like this weirdness was spreading from his arms in to his right leg, her actual response was:  is this a google diagnoses?

So we did, we stopped second guessing, we stopped talking about it, we stopped thinking about paralyzation, feeding tubes, death.  We held on to hope that this would be an awful disease but not terminal. 

Now we know it's terminal. 

I can't see beyond this moment.  Right now.  I'm scared that he'll tell me he can't walk today. That he can't swallow.  I'm scared when I hear him cough, he'll start choking and I won't know how to help him.  That he's going to fall down in the shower and I won't be there to get him up.  That he's going to start to die before my very eyes. 

It makes me afraid to drive, afraid to work, afraid to make small talk with friends. 

What do I do now?
--------------------------------------

We've come a long way.  I don't ask myself what do I do now as much.  I'm not as scared.  I can see beyond this moment but I generally choose to stay in this moment because it's good to be here, right now, with him.

He's fallen down many times in the last year and I know how to get him up.  I've fallen down many times!!  Mostly emotionally.  But I know how to ask for help.  I know how to get up.

You hear about "average life expectancy" with ALS:  2 - 5 years. The fact we have one year down looms over us.  And yet, it's looming far away.  It's not standing next to us, casting a dark, scary shadow.  Every day is a gift.  

Update

The best news:

Luther's gained 8 pounds!

ALS is a muscle-wasting disease, which basically means your muscles die.  It's not like he can go to the gym and lift weights and get them back.

The more weight you lose, the faster an ALS patient dies because it just makes you weaker, faster.

So yay!  After losing 50 pounds in the first 9 months of testing and diagnoses, he's been pretty stable and now, gaining weight is good.

Better news:

His swallowing hasn't gotten worse. 

This is pretty major!  Think about NOT being able to swallow and what that might be like.  No eating, no drinking, you could choke on your spit - that's when the dying faster part kicks in.  

I've been pretty worried because I've noticed Luther's words slurring a little and his coughing is OUT OF CONTROL.

Luther and I never fight because he's too cool of a cucumber to engage in a fight. But today, we had something that came close to looking like a fight.  

We were in with the speech therapist (who looks like an Abercrombie & Fitch model, by the way) and of course, Luther would not cough.  Bo (yes, that's the speech guy's name) even fed him graham crackers to get him to cough and no go.  

It makes me feel like I'm crazy.  I hear Luther coughing and choking and I see his face getting red and making weird coughing faces and I worry.  He's all like "I have no idea what you're talking about."  Wait... what?   Luther doesn't think he coughs at all.  His coughing wakes me up, for heaven's sake.

The good news is his coughing is NOT related to swallowing issues.  Bo thinks it's due to acid reflux which IS due to the extra saliva building up as well as smoking (that's a whole 'nother lecture) and drinking coffee.  Fortunately, there's some medication Luther can take as well as the whole stop smoking campaign I'll be waging.

The not so good news:

His mobility is worse.  That's been clear over the last month.  He's fallen twice, he can't get up out of a chair anymore, his arms and hands are basically useless.  A month ago, he could feed himself if he ate finger foods (remember the pronto pups from previous posts?).  Now, someone has to feed him.

His legs have some strength and he can walk, just not very far.

On a related note:  because his hands are so weak,  they're putting a "foot drive" on his wheelchair. Right now, he uses a joystick on his armrest and his hand cramps up.  Next Monday, they're putting something on his foot rest which allows him to drive the wheelchair.  Cool!!

What his loss of mobility means is I need to stop working.  We've chosen to stop using a home health care worker because we've had so many bad bad bad ones.  Because we're leaving in January to head south, we decided not to continue going through health workers for the next two months.  

I thought reducing my hours to around 25 hours a week would be good.  It isn't.

The therapists expressed some concerns over leaving Luther alone - which I do for a few hours when I work.  I do have people coming in to check on him for an hour or so but not stay with him.  If he couldn't get up out of his chair or had to go to the bathroom or fell down... well, it would be awful.  

The idea of not working at a job - a career - I've built over the last 17 years is just a whole different blog post.  

I'll just leave it at my perspective is changing - HAS changed.  

It should be so simple, right?  My husband is dying and I want to spend every single second with him. 

There are a zillion million things at play - work, finding time, being emotionally tired, getting affairs in order, grocery shopping, packing to leave - things that keep me from spending time with him.  

But you know what?  I'm trying to cut through the bullsh*t and make it simple.  Wait. That's a bad word.  Cut through the stuff we are never really exempt from doing - the way life just goes on with or without us.  Sometimes it feels really really hard but none of us really gets a pass from making dinner or cleaning the house or feeling emotions (I try sometimes but... those dang emotions tend to squeak out...)  I never ever want to look back and remember I was at work or I was too tired to be with Luther.  

Ok wait.  This post isn't about me.  Funny how that works.

Overall, Luther is good.  Luther is GREAT.  I can - we can - deal with his not moving issues.  Sure, it's a struggle to adjust but many people live with some form of paralysis.  There are nifty gadgets to help get him up, get him out.    The fact he has maintained his weight and his swallowing / breathing hasn't changed is most excellent news.  

Taking a blog break.

I suppose when I write things other people read, I open this stuff up for scrutiny.

I think I'm going to take a break.

We have a clinic coming up Nov 18 -- an all day visit to the VA to see how Luther's doing.

I'll post how he's doing then.

Some things you don't want to see...

Do you want to see your future?   Good, bad, ugly??

This is what going to a support group is like.  Or watching or reading something about ALS.   It's hard to hear or see what's in store.  It's hard to hear how tired or desperate or angry people are. Sometimes it's even hard to hear or see people being awesome!  Hard in a different, sort of raw and emotional way.

We decided not to see the ALS movie "You're Not You" for a couple reasons:

I don't want to watch a movie star depict the life we lead.  Neither does Luther.  I'm glad for the awareness, for sure (although I don't think the movie is too popular...).   But it's never really the life we lead - that would never make a great movie.  I'm sitting here in my long undies and a sweatshirt, Luther's downstairs watching college football.  We don't have a kooky home health care worker leading him on crazy adventures.

There are enough real life documentaries to watch, to support, to spend our time opening our hearts to this struggle:

Patrick O'Brien's had ALS for 10 years.  10 years!!!  He's been filming his "journey"  (I hate that word - like it's some adventure down the yellow brick road) - he's been filming his disease.  The documentary is coming out later this year.

http://time.com/3160305/living-with-als/

Hope for Steve.  I follow this couple on Facebook.   Her attitude toward being a caregiver changed my perception of the choices I make in the face of living with ALS.

https://www.facebook.com/pages/The-Documentary-Hope-for-Steve/195021390697220

This is the story of Tempt One - a 30 year old graffiti artist.  The first link is an recap of the amazing technology that's come out of his disease called the Eye Writer.  The second link is the documentary.

http://www.fastcocreate.com/1679433/getting-up-how-a-locked-in-graffiti-artist-inspired-the-impossible

http://gettingup-thedoc.com/

We'll continue to go to support groups.  I go to therapy - which, at times, is like going to the gym.  I never want to go but I'm glad I did once it's over.  I get tired of facing things, of talking about ALS. But facing those fears or anger is good.  It lets it out and gives us space and time for the good stuff.