Monday, December 29, 2014

From the man who started the ice bucket challenge...

                                             This really cute kitty wants you to watch this video.
     (Click the blue link below)

Click the link above - it's an awesome AWESOME video shown on ABC News about Pete Frates. He's the guy who started the ice bucket challenge.

This brought tears to my eyes on a personal level as I watched Pete's personal home care attendant pick him up out of bed, as I watched his dad tie his tie.

It reminds me of us and the trajectory we're on.

It also brought happy tears to my eyes and filled my heart (is that too sappy!?  Can I be too sappy talking about this stuff?!!) when I saw the very first ice bucket challenge and the amazing involvement of so many people.

In my last post, I questioned whether the ice bucket challenge created awareness.

Watching this video makes me realize it DID promote awareness, it raised much needed money.

Many - most - folks won't know the specifics.  And maybe they don't need to, as long as it's somewhere on the radar,

Friday, December 26, 2014

Do you know why you poured a bucket of ice over your head?

I haven't given much thought lately to whether or not people know what ALS actually is.

I started this blog to vent, to get my fear and frustrations out of my head and in to the ether.  In to space.  Anyplace but locked inside me where crazy thoughts just multiplied in to crazier thoughts.

As I got to know more about the disease, I decided I wanted to use this blog as a way to let you in on ALS.

Luther and I interact with family and friends with this new identity: terminally ill; I thought this blog could serve as a way to help people in our lives be more comfortable with that label. 

As we met more people who (like us in the beginning) didn't know what ALS was, I thought this blog could shine a light on this disease.

I've lost sight of that a little over the past few months and have simply been reporting on our life.  My place to vent.  

It was a couple nights ago, when we were with a new group of people, that I realized ALS is still a mystery disease.  Even with all of the publicity this summer, all of the money raised (which is awesome!), people still do NOT know what the heck ALS is.

The people we were with knew Luther was sick.  But they didn't know why.  When I said it was ALS, I was asked, what is that.  I said Lou Gehrig's disease. Again, what is that?  I said, you know, the ice bucket disease?  Ohhhh - yeah.... that.  But what is it?

In thinking about the ice bucket challenge, the way the challenge "went viral" and raised so much money was really a thing I'm not sure will be repeated.  It just took off in this amazing way.  I will forever be grateful for that level of awareness in terms of getting people to think about it and actually donate!

But I realized there wasn't much talk about the actual disease.  What is it?  What happens to you?  Is there a cure?  Is there a treatment?

I want people to know what ALS is.  How it affects people.  How we live with it.

Maybe people don't want to know????   Everyone has their own problems.  A lot of people have dealt with illness, their own health issues, with death.  Do you need to hear from me about our host of issues?

I struggle with saying too much here.  With sharing intimate or sad or angry things.  And yet, I hope what I write lets you in.  That's a huge thing with me.  If you've read through this blog, you know I keep things closed off, walled up.  Being with Luther and especially now with this disease, I've been forced, in a good way, to be more open.  Let people in to our life because we need the support.  

I want to let you in on what life is like with ALS in order to create a bond, to share our story.  I don't want pity or sympathy.  I'll take your compassion, your support and I especially like hearing from people who share their perspective on their life.

I think I'm rambling.  ADD thinking.  Weaving from one thought to the next.  It's late.  Time to tuck Luther in to bed.

Summer fun - our icebucket challenge:

Monday, December 22, 2014


So Friday was my last day of work.  I didn't consider the weekend official retirement days because it was the weekend.

Today, Monday, 12/22 is my first official day of retirement.

It's this wide-open, vast feeling.  I look to the future and it stretches out ahead of me.  Which really is another way of telling myself I can clean the bathroom tomorrow...

I'm not a super structured, disciplined gal.  I tend to let the day direct me -- I don't really plan much.  As much as I like to think this is going with the flow, it's really more not being comfortable in a planning, leadership role.  At work it was different -- I was good at figuring out what needed to get done and doing it. I could juggle 12 things and maybe drop one plate.  At home, I don't even pick up the plates.

It's going to be an adventure for sure planning out each day.  I feel like a clip board might be in order.

Being with someone a lot feels, ummmmm, interesting.  I think I need to set aside this feeling that I'm Julie from the Love Boat.  Entertainment Director.  On the flip side, I have to remember to go be with him.  We aren't on the same level (my 3 level townhouse).  Sometimes I get to doing something and two hours go by and I realize I've left him downstairs.  Being responsible for someone's activity is weird.  Do you have an itch?  Do you need to eat?  Glass of water?

It will be great when we move to be on one level.  And have the wheelchair inside the house so he can move around on his own.

Well - off to go do retirements stuff.

Disclaimer:  This probably isn't 100% retirement.  More a family medical leave.  As is the norm these days, my work future is in limbo.  My work's been great in terms of allowing me to change positions, go to different stores, take time off when needed.

On my last day, I kind of expected a parade or confetti.  I've worked at Turn Style for 18 years!!  My boss did show up with flowers and a hug but he said he wasn't planning on doing anything because he figured I'd be back.

Who knows?!  I might be...

In the meantime, I'm going to go make a plan!

Sunday, December 14, 2014

on the upswing

Life seems relatively sane lately.

Luther's coughing has decreased quite a bit because of his new meds.

His new meds make him feel good, less pain.

His mobility isn't the greatest; in fact it's gotten worse.  For me,that's ok.  I can lug him around any time.  I'm just so happy to have him lucid and still eating and talking and swallowing.

There was a time in our relationship I wasn't sure if Luther was the guy.  The one.  I hate that he's sick, I hate that he's in pain and has to go through this.  But in so many ways, this stupid sad disease has made me fall in love with Luther so much more.

I get mad at him like regular couples get mad at each other.  It's not like the ALS has created this fairytale.

Quite the opposite - it's a nightmare at times.   But struggling through all this together creates an amazing bond.  He's so patient with me, he's so kind and generous and he's the one who holds me together most of the time.

I just wanted to write a post to tell everyone we do have fun, we do enjoy each other and it's not always such heavy, sad stuff all the time!!

Tuesday, December 9, 2014

I let a friend down tonight

What a weird feeling.  I'd made plans with a friend tonight and I completely forgot about it.

There are a million things I want to say:  why didn't you call when I didn't show up?  why didn't we connect from the time we made the plans to today to reconfirm?

But there really is no excuse other than I forgot.  It's a really lame reason.  I know it.

I know I made her feel not important.  I feel selfish and wrapped up in this.  I can try to defend myself and say I have a right to feel selfish.  This is an extraordinary time.  And yet, my friends are my friends.  In this extraordinary time, they are my lifeline.  My support system.

It's a two-fold thing:  life in it's most ordinary of ways, marches on and I have to march with it.  I still have to make dates, go to appointments, remember to show up.  I still have to be a friend.

The second part of it is I'm in a situation I've never faced.  Maybe in this time, I need to be more aware, more diligent. An even better friend.

I owe it to her but I also owe it to me to make sure I'm keeping connected. I need her friendship, more now than ever.  But she needs mine, too.  It makes me feel good to be a good friend and tonight, I wasn't.

This feeling is reminiscent from several months ago when I was forgetting a ton of stuff.  I think I forgot a plan with this friend back then, too.

I was forgetting times, dates, appointments.  When I started using a calendar, I was putting the wrong time/date in to the calendar.

I don't know why I'm in this mode? I mean, I guess I can put it all on Luther's illness.  But it's not that. That's too easy.  It's got to be more.

Thank goodness I have therapy tomorrow.  This goes to the top of the list.

Monday, December 8, 2014

Guilt. Grief. Just another day.

Today, I'm giving up my cat.  I've retyped that sentence about five times.  Giving her away. Surrendering.  Giving up on her.

I've had her 14 years.  She's a good girl.  A lot like me, I guess.  She doesn't like a lot of attention. She hangs out by herself a lot.  When she wants something, she'll let you know without too much drama.

When I come home from work, she'll run down the stairs and come sit wherever I am.  She doesn't really like Luther too much.

If you've read my previous posts, you know Luther is pretty much always downstairs. When I spend time with Luther, once in a great while, she'll come down and sit a few feet away from us. Generally, though, she hangs out on the stairs so she's near us but not in the same room with him.

When I first got her, I didn't see her for about 3 months.  She hid.  I knew she was alive because she was eating and pooping.  Eventually she came out and we became friends.  I am her only friend because she is unwilling to come out and meet anyone else.  Most of my friends and family don't believe I have a cat; they've never seen her.

Now that we're heading south for a few months, now that we're moving and don't want cat hair and allergies at anyone else's home, it's time to surrender my cat.

I've been thinking about this for a long time.  I'm off to let her go right now.  More later.


Well -- I guess I don't need to write Baby's (that's her name) obituary.  She's not dead.  She's finding a new home (hopefully).  They said they have a couple different programs for older, shy cats - well, probably for cats that don't get adopted right away because they aren't super cat-cute... one of the programs is called "Hidden Gems" - which made me smile.  My hidden gem of a cat.

I think this whole thing isn't about the cat.  Well -- it is.  I'm sad.  I'm sad right now that she isn't here. I wonder if she's scared or lonely.

But it's more about the changes, these changes we're all going through... the feelings we all get to feel.

I'm pissed off that I gave up my career, that I gave up my cat, that I'm giving up my home.  Pissed off in a general, shake-my-fist at the sky kind of mad.   I'm not mad at Luther.  Far from it.  Just pissed at ALS.

It's difficult to explain to most folks.  We're so so so fortunate that I can afford to stop working.  How lucky is it that I can move in with my parents?  They live close.  They said YES.  We're going south for the winter.

At the same time, I'm feeling scared.

Ok.  Enough, I guess.  I can "wrassle" with these feelings forever.

I talked to my therapist about letting go of these feelings and he said you'll never let go of the feelings.  They aren't things to let go of.  The stuff that makes you feel is what you let go of, not the feeling.  Makes sense in many situations but... in this case, it's a terminal illness that makes me feel this stuff.  How do I let go of that?

Sunday, November 30, 2014

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.

Saturday, November 29, 2014

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. 

**  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 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.

Wednesday, November 26, 2014

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 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. 

Tuesday, November 25, 2014

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:.

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.

Monday, November 24, 2014

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.

Sunday, November 23, 2014

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?

  1. not able to be relied on; not known or definite.
    "an uncertain future"
    synonyms:unknowndebatable, open to question, in doubt, undeterminedunsure, in the balance, up in the air; 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.

Thursday, November 20, 2014

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.  

Tuesday, November 18, 2014


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.  

Wednesday, November 5, 2014

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.

Saturday, November 1, 2014

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.

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.

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.

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.

Thursday, October 30, 2014

Pick a cliche

Feeling the immensity of ALS a few nights ago but the last couple of days have been mundane, back to "normal" and for that, I'm grateful.

I'm upstairs, watching some goofy reality show and he's downstairs, hanging out.  We're leaving soon to get his haircut, I'm going tanning (I know!  tanning...) and then we're getting pedicures.  Important, mundane stuff.

Life moves on whether I'm hiding under the covers or fully present.

So pick your cliche of the day:

Today is the first day of the rest of your life.

Live today is if it's your last.

Dance like no one's looking.

Be happy for this moment.  This moment is your life.

Cherish yesterday.  Dream tomorrow.  Live today.

Life is like a bicycle, in order to balance, you must keep moving.

Your struggle is simply a part of your story.

Tough times don't last, tough people do.

We must let go of the life we have planned, so as to have the life we have waiting for us.

Turn your face to the sun and the shadows fall behind you.

Just keep going.

Pick your cliche.  There are 1000 more.  Whether it comes naturally or I have actually say it over and over and over until it comes true - TODAY IS A GOOD - WAIT!! MAKE IT A GREAT DAY!!

My last cliche of the day:  fake it 'til you make it.....

Monday, October 27, 2014

Overwhelmed, under the covers...

The life I had is gone.  The life I thought I was going to have will never happen.

When Luther got sick, I questioned whether I'd be able to live up to this illness.

Tonight, I don't know if I can.

Tomorrow, I will, but tonight, I don't know what to say, what to do to make this any better.  How do I make Luther feel better?

I got in to bed with Luther tonight, his little twin hospital bed and put my arms around him.  I started to cry and then realized he couldn't turn over to face me.

He couldn't even reach down to touch my hand so I had to stop crying so he wouldn't feel any worse.

I get it, I understand that aren't any guarantees.  I know there are people worse off than us.  The world doesn't stop because Luther's sick.

We have a zillion decisions to make.  Some are financial. Some are very personal.  Some we can't make alone and some we don't want to share.  Much of this hinges on the future -- a future that is cloudy and uncertain.  A future I want to be bright and happy and full of things crossed of the bucket list.  How do we balance financial stuff and bucket lists?

Plus I can't cook.  That's been on my mind.  How do I keep Luther fat, staving off more muscle degeneration if I can't figure out how to menu plan.  Popcorn for dinner is ok with me.  It's like sudoku or quantum physics.  My fridge becomes a big black hole.  I've been trying to make slow cooker chicken and dumplings for a week but I have to time it just right to be home an hour before it's done so I can throw in the dumplings.  Just typing that made my brain freeze.

That was a stupid sidebar, I'm trying to take my brain off this emotional tsunami.  Ugh.

What I realize the most is how much my life is changing.  How much I have to change.  How much I have to take on in order to create a good life for Luther.  Tonight I bugged him, I nagged him, I brought up some really tough issues.  Stuff we are both responsible for but I put it on him.  It wasn't fair but I did it out of being scared, feeling insecure.

I think it's time to get under the covers.  Just for tonight.  Pull them over my head and hope to keep the ALS demons at bay.

Tomorrow's a new day.

Some days it's hard to get up.

Saturday, October 25, 2014

Things I miss. Things I used to take for granted. Things I try harder to keep in my life that I used to take for granted, so I don't miss them anymore...

I started making a list of things I miss but that was too sad.  One is having the option to sleep in the same bed as my husband.

I just tucked him in.  He has a hospital (twin) bed that continuously moves; I guess once he's in bed most of the time, this prevents sores.

We live in a 3 level townhome right now and he's in the basement.  That's his 500 square foot world.

Our room was up on the very top but now, we never use that.  I sleep on the couch on the middle level so I can hear him.

Truthfully, I slept on the couch a lot when we were able to sleep together.  I don't have the option to join him anymore unless it's a quick snuggle.  Maneuvering in a twin bed is tricky.

He goes to bed really late.  Before, he used to be able to get in to bed by himself.  Now, I have to pull up the covers.  If the covers come off him, he can't get them back up.  :(  

Luther can't reach out and touch me anymore.  No hugs.  No holding hands.  We don't have a couch or loveseat downstairs so we don't sit together.  He's in his chair, I'm in mine.  Edith and Archie-like.

At times, I actually have to remind myself to touch Luther.  Think about it.  Your day flies by and have you made any human contact??  Hugged your kid?  Held hands with your partner?  Simply reached out and touched someone's arm as you talked?

What if, one day, the person you are in love with couldn't touch you anymore?   Would you regret not being more affectionate?

So I've been stepping up my display of affection game, which is actually a little difficult.  I hang out with a group of friends who love to hug.  I am not a hugger.  Well, wasn't a hugger.  At least now, I don't stand, arms stick straight at my side while someone attempts to hug me.  I've gotten a little more gumby like, more flexible and actually do a 1/2 hug back.

With Luther, I have to lift him up out of his chair every so often and I like wrapping my arms around him, giving him a bear hug.  It's hard sometimes to lift him up.  But once we're both up, I take that extra time to lean in to him, just be with him for a minute. Sometimes I take his arms - heavy and awkward - and put them over my shoulders so he can hug me back.

Usually when I brush his teeth, it's pretty utilitarian.  Get 'r done.  Brushing someone's teeth is a pretty intimate act.  I don't particularly like to do it and I'm guessing he doesn't either.  More and more though, I remind myself to slow down, rub his arms, give him a smooch.

It's those things you take for granted when you have them.  Like always making sure we slept in the same bed together, which I didn't always want to do when we could because I was too hot or he snored or I got jimmy legs.

I miss the snuggle.  Touching toes in the middle of the night to make sure he's there.  The little things that keep you connected.