Monday, November 16, 2015

Days 2 - 4 - GRATITUDE!

The biggest deal in the last couple of days has been SLEEP!

Luther and I went to a casino to see a comedian and we decided to stay overnight.

It was tricky since it was the first time he was out and about in the wheelchair using his head to move it forward.

The best way I can explain it is when you ride a bike and you want to take a right, the bike is still moving forward.  With his chair, he has to come to a complete stop and then turn, so it's very jolting.

He looked drunk, moving his head this way and that.  Practice will make perfect!

All in all, it was a really good time. We enjoyed each other's company, it was relaxing, the show was great, we smooched a little and we slept and slept!  It was wonderful.

The other big deal is the weather!  Aren't we all grateful for this weird, warm weather?  It's been a blessing for us both - it's so much easier to get around in the chair.

We had a conversation about moving to Florida for a year or so.  Luther said even this summer was too cold for him.  He got sick in July, he was hospitalized twice and he felt like he hasn't really recovered.  The heat in Florida just warmed his bones and he felt so good.

We're incredibly grateful we have a place to hang out in Florida and we'll be heading south again in January.  We'll make a decision about staying later, once we're there and see if Luther starts feeling better again.

Grateful recap:




Thursday, November 12, 2015

Day 1 - Gratitude

ˈ            ɡradəˌt(y)o͞od/
  1.            the quality of being thankful; readiness to show appreciation for and to return kindness.
               "she expressed her gratitude to the committee for their support"
              synonyms:gratefulness, thankfulness, thanksappreciation, indebtedness; 

Gratitude - Day One
Ok, I'll just get it out there.  I woke up today in a pretty sh*tty mood.  Second really cold day, gray, rainy.  I was tired.  I never get a lot of sleep.  4-5 hours, usually interrupted.  My therapist mentioned if I just got a week or two of normal sleep, I probably wouldn't need therapy!!  

Recently, this past weekend, someone from an ALS group I'm in online died.  His wife posted this sentiment from his Facebook page:  when he was six years old, he would wear his shoes to bed because he was so excited for the next day to start!  He wanted to hit the ground running.  

That made me smile and it made me think about how I need to rethink!  I tend to drag around in the morning - hard to get started. Maybe it's time to get out of bed and enjoy the day.  

My gratitude today is the fact I have an awesome husband who is patient, kind, smart. Through all of this, he's been a rock.  My life preserver.  When he should be the one falling apart, he's constant. 

I should say that the stuff I say in this blog is NOT the stuff I say to him.  With him, I'm (usually) happy.  I use the blog to vent whine vent.  I do discuss the more serious stuff with him - the depression, the times I need help with his care.  Back to being grateful:  how lucky am I that we can face this awful illness together?   We're a good team.

Wednesday, November 11, 2015

30 Days of Gratitude

I'm sitting here on this cold, rainy night eating a peanut butter cookie topped with a chocolate kiss and I'm thinking - does life get much better?  My husband is in the other room under his electric blanket, snug as a long skinny bug.  We have nothing to do tomorrow:  no appointments, no obligations.  

Life does NOT get much better than this.  Simple things.  Living for the moment.  Being in love. Feeling secure.

I'm tired of being sad and cranky.  What is the saying?  I'm sick and tired of being sick and tired.

It's time.  Time to flip the switch from this constant sadness to a little bit of happiness. Which, hopefully will lead to a little bit more happy. And more....

I read this:  your level of happiness is in direct proportion to your level of gratitude.

I have a ton of stuff for which I'm grateful. I'm a pretty lucky chick. 

I know that right now is just a moment in time.  Weekends get tough.  Endless hours of not leaving the house.  The walls close in. I have at least 100 things I could be doing but I feel like I cannot do them.

Depression is the weirdest feeling. It's like I get stuck in cement and it's so heavy.  I cannot, I really truly feel like I cannot lift my arms to fold laundry.  I know I can. In the front of my brain I say over and over:  get up, lift your arms, stop being a wimp, stop being a baby.  But depression isn't rational.  It doesn't work with the front of your brain.  It lurks around in all the other dark spaces.  Therapy has taught me how to get out of it. It takes a while.

So I had this little chat with myself.  Luther is the one who cannot lift his arms.  I bet he'd give a million bucks to be able to lift his arms.   Be able to feed himself.  Get his life back.  I cannot let the weight of my feelings prevent me from lifting my arms.  I AM Luther's arms, for goodness sake.

Even though I know this depression is lurking around the corner, just waiting for the chance to mug me when I'm not looking, I'm going to take the next 30 days to be happy.  Do you think it can happen?

Some days might be fake.  haha!  Some days WILL be fake.  My goal is to get out of the rut, realize what's in front of me:  a husband I love, a supportive family, great friends.

Today, I'm grateful for the fact it's raining in November, that my husband is safe and warm and I'm really grateful for this awesome peanut butter cookie!

Sunday, November 1, 2015

get your happy on - UPDATED

This just isn't working.  I can't figure much out.  Been in therapy for over a year.  Started seeing MORE therapists at some eating disorder place.  Went out and bought a box of Lucky Charms and ate 3/4 of the box in one sitting.  Something ain't working.

The food therapist said I need to watch that mindless eating.  I just laughed and said it was VERY mindful!  I made a point of driving to Cub and finding that box of Lucky Charms and really enjoying sitting down and eating it.  It was a well thought out plan.

I dislike everything.  Every single thing.  I can't find anything I really like.  There are things I love like Luther. My family. So I'm not looking to jump off a bridge.  I've felt that way before and this doesn't feel like that.  It's almost worse.  This feels endless.

What to do?  Just go for a walk?  Get over myself?  Stop whining?  Start a grateful journal? Eat an apple?

I started anti-depressants.  Hopefully that will help.  I'm not sure I'll stick with the eating disorder thing. It just feels like too much therapy.  Even the food therapist agreed it was a lot of analyzing. She made the observation I might feel a little "prickly" with all this reflection.  I've been a dang cactus. Prickly, angry, annoyed.

This is very unhelpful for Luther.  I think he gets scared to ask me for help.  I suppose if I keep rolling my eyes when he asks me for stuff...

It's hard though, to know I've quit my job to be his caregiver and he doesn't want me to care for him. It's minimal care.  Help him pee.  Light his cigarette.  Feed him.  Put on his blanket. That's about it.

What to do?  Put on my sexy cheerleader outfit and get all "yay rah rah?"  (I actually don't own one) Insist on caregiving - just set the schedule and do it?   How do I get him out of the house and interested in things?  Do I invite people here?  Half the time he won't talk.

I think it's just one foot in front of the other.  Just keep plodding along.  Let things happen.  What else is there to do?


I went for a walk this morning, still thinking about this post - how can I change things?  We were up at 3:30 this morning (went to bed at midnight) - then again at 6 a.m. when he's up for good.  I make him coffee, he smokes :( :( :(   then I try to go back to bed but it never works -- took the dog for walk.

Around 8, I climbed back in to bed, thought I'd try to sleep.  At about 7:30, asked Luther if he wanted to eat, need another cup of coffee?  No, no, he's fine.  Guess what?  At 8:10, as I was falling asleep, he wanted to eat, wanted that extra cup of coffee.

People will say, oh I can relate - it's like having a toddler.  No sleep, You're on their schedule.  But you know what?  Your toddler has a future.  You feel hopeful, even through your sleep deprived crabbiness, that your kid will grow up.  I feel hopeless.

Sure, my goal each day is to give Luther some level of happiness.  Make him comfortable.  I totally get that he's alive now.  Live for today.  Figure out a way to see a movie, hold hands.  You know what he wanted to do the other day?  Shop for funeral homes.

The changes are subtle but they alter us tremendously.  I asked him if he could stop walking, would he? He said yes.  But the alternative of me using this lift with a sling to lug him out of his chair just to pee or smoke seems worse.

This is a hoyer lift.  We have it in our house now, part of the furniture, I guess.

I took a selfie of me on Halloween and if you look closely, you can see the lift and his wheelchair in the background.  I doubt anyone else noticed but it made me realize our slice of my parent's home is riddled with medical equipment.

Anyways - this is the lift.  I don't wear a white uniform.  I think you can see why Luther keeps trying to put one shaky foot in front of the other to get to the bathroom.

There's actually a slit up the butt/backside so you can just do your business out the back once you're lowered on to the toilet.

I haven't really made a clear pathway from his bed to his chair to the bathroom quite yet.  We need to practice using the lift before it's an emergency.  We both keep putting it off, as usual.

I'd love to say a new day = a new attitude.  As I was walking the dog, I thought - I'm grateful it's really nice out today.

That's all I could muster.  I know it seems selfish.  I know.  I know.  I know.  That almost makes this sadness worse.  If I could live in blissful ignorance - would that be better?  I get that this is about Luther, not me.  He's the one dying.  I am so thankful we're here together.  Saying all of this out loud makes me feel so selfish and weak -- tired and defeated at times.  But we have a long road ahead of us.  I have to figure out how to deal with these feelings.

I'm supposed to muster up the energy to do stuff.  Power through.  Just do it.  Get it done.

I will.  Eventually, I do.