Friday, August 18, 2017

Live like Ed for just 10 minutes

I challenge each of you to live like Ed for only 10 minutes: Lay on your back, flat. Tilt your head to the right. You cannot move it to the left. As a matter of fact, you cannot move at all, other than some toe wiggling. Be sure your arms are flat to your sides.

No scratching. No moving. Keep your head tilted to the right, so if someone comes to your left side, you cannot see them. Need a drink of water? The tv channel changed? Need to pee? Do your lips feel dry? Is there something in your eye? Is anyone near you to ask for help? Need to eat? Oh - wait, you don't eat anymore. You're fed through a tube in your stomach.

Many people - including Ed at one time - would say they would NEVER live like this. They'd rather die. They think this life is worse than death. And yet, here we are. Ed lives like this 24 hours a day. The will to live is strong. We are together, he loves his friends and family, he is not ready to die.

This year, I am NOT walking to find a cure. Instead, I am walking for the ALS Guardian Angels - a small non-profit run by one man who is committed to bringing financial relief to people whose lives have been devastated by this awful disease. The relief comes in the form of grants to help with bills, medical equipment, advocacy. The money goes directly to people in need. There is NO overhead, the man who runs the charity does not get paid.

Whether you can donate $10 or $100 - know that every dollar you donate will directly help someone who is in desperate need to keep a roof over their head, to purchase a wheelchair, to find a way to communicate.

I am hoping to make it to California to join the walk and represent Team Flying Squirrels. All of the money raised will go to the Guardian Angels. I'll be paying my own way to Cali!

Here is the link to Team Flying Squirrels:

You can also buy a t-shirt and make a donation at this link:

Thursday, July 20, 2017

Ed update

I've turned off the feeling part of my brain lately, so it's difficult to write about what's going on.  It's exhausting to think about, analyze, process grief, be sad all the time.

I guess it doesn't go away because I flipped my emotion switch off.  It's simmering around somewhere.

Ed is so tired all the time.  Maybe it's his tiredness that makes me realize I can't be tired and sad all the time, too.  My job, my goal is to make his really small world a comfortable, safe place.  Not necessarily happy.  Sure, I want him to be happy.  But I think peaceful is a better word.  Content with what we have.  Staying grateful and positive.  It's a challenge.

ALS is a disease of change and loss.  It's constant.  We pretend we have some respite from it, but it's always there.  He lost his arms and hands.  Then his legs. Lost his job.  Mobility. Intimacy.  He can't eat anymore.  His dignity has been chipped away.  The amazing thing about Ed is he goes with it.  He is such a quiet force.  His strength is incredible.  I rail against the world, take my frustration out on food.  He's still my rock through all of this.  I can only hope I give him some sense of stability.  I hope I make him feel valued and so very loved.  

At this stage, 3 1/2 years from diagnoses, we wonder what's left to lose?  His voice.  His lung capacity.  His life.  That's what we silently wait for.  This insane limbo, waiting for the proverbial shoe to drop.

We don't talk about much about it.  Or really, even consciously think about it.  I admit I'm always looking for the signs.  How's his breathing?  His voice gets so weak, he can't talk. Every time he coughs, I wonder if this time, it will lead to choking.  

Over the last several weeks, he hasn't been out of bed much.  Says he's too tired.  It's too hot.  I encourage him to get out of bed.  It seems like the right thing to do.  

I never thought about losing the ability to get out of bed and sit up in his wheelchair.   We talked about it yesterday and again today.  He just doesn't want to get up.  It hurts his diaphragm.  He feels all scrunched up.  

So now that's the latest loss.  He said he does not want to get out of  bed anymore.  I asked him how he felt about this change.  He just looked at me and smiled.  What can I do, he asked.   It's ok, he said. It feels better to be in bed.  He's comfortable.  And that's the thing.  That's what life is about right now.  Comfort.  Making his life easier. Safe.  Peaceful.


Monday, June 12, 2017

Same as it ever was

It's 1:30 a.m. - Monday.  June 13.  I can't sleep. I'm sitting in the spot Ed used to sit and sleep when he was home.  I miss him so much.  I miss our life, having him with me.  I hate this - being here by myself.

The first picture was taken two years ago - we were on our way to Key West.  We've made some amazing memories.  The second picture is from last month.  At the nursing home.  Where he is now.  By himself.

I cannot, cannot imagine his life.  He has days now where he doesn't get out of bed.  He lays in the same position for days.  Sure, he's repositioned but he doesn't get up.  Day after day. Much of the time by himself.

I let these thoughts eat at me when I can't sleep. Should he be here, at home?  Did I try hard enough to keep him here?

We talk about it often.  We talk about it objectively - how much it would cost to have 'round the clock care.  What if someone didn't show up?  What it was like when he was home and bedbound.  We talk about it emotionally - now much we miss each other.  How great it would be to be home.  But then we remember how miserable it was when neither of us got any sleep, when he was coughing and choking non-stop.  Every conversation leads us to the same place:  he's where he needs to be.

I miss Ed so much.  I grieve the life we won't have.  His arms around me.  Times like this, late at night, unable to reach out and feel safe next to him.   Lately, I rerun our relationship over and over. The things we could have done, where I could've been a better partner.  It's a maddening thing to do.

Ed just came out of another urinary tract infection.  He was confused again.  Unsure where he was.  It lasted several weeks - maybe a month?  Those times are so hard.  He thought he was in Louisiana.  In a garage.  At a cabin.  In the hallway.  He just cleared up a few days ago.  It's good to have him back.

His goal this summer is to go fishing.  He's obsessed with it.  Or was.  We went to Cabela's a few weeks ago.  It was really rough.  We knew what fishing rod we wanted and found it.  He wanted me to put it in his hands.  He honestly thought he might be able to hold it.   He thought, he actually thought if he wished it hard enough, it might happen.  I did NOT want to put that pole in his hands but I did and it fell straight out of his hands, on to the floor.  He was crushed.

Since then, he hasn't talked much about fishing.  He was in the second week of his UTI at that point. The delusions were just so starting but we didn't know he had the UTI yet.  Maybe that added to this moment??

He's very very tired now.  The weather hasn't cooperated.  Neither did his hands, if you ask him.  I swear I'm going to get him out fishing - it has to happen.

I think I'm just rambling.  Time to try to sleep.  Hopefully, no dreams.  I don't write as much anymore because we're stuck in this limbo.  Content in many ways that Ed is still here, still with me.  But sad, empty, stuck in this same day.

I love Ed so much.  So very much.

Monday, May 1, 2017

The long drive home

Each night I leave Ed, my heart stops just a little. By the time I leave, he's getting sleepy from drugs and ready to drift away.   That makes it easier.

The reality is every one of us could go to sleep tonight and not wake up, right?  I think this every night I leave Ed.  Even though he's doing pretty good, I think this.  Could tonight be the night?

So I tell him I love him very much. It hurts to leave him.  To leave him alone in the dark.  To not be there when he needs help.  If he dies when I'm not there, I want those to be the last words he's heard. That I love him so very much.

When I leave, I try not to cry. He's all sleepy and smiling at me and he tells me he loves me too. Will those be the last words I hear??

The drive home is hard.  Sometimes I practice his eulogy.  This sounds weird and morbid.  But it's helped me keep Ed solid in my head.  Does that make sense?  Reviewing healthy Ed.  His accomplishments.  I say these things out loud as I drive home.  The things he loved.  Loves.

Doing this makes me cry.  I've had to pull over because I couldn't see through the tears. Oddly, it helped.  It cleared my head.  Stitched up my heart a little so I could climb in to bed by myself.  I don't want to say it helped block out the image of Ed alone in his room but it soothed my heartache a bit. Keeping Ed close by talking about him as I drive home.

I can't believe it's been two months since I've posted anything here.  Almost all of February and March, Ed was back to hallucinating insane things.  He took trips to Vegas, Tallahassee, unnamed forests and lakes.  He auditioned for a movie.  He went hunting and on secret missions.  He was in a sinking boat one minute and in a fire the next.  It was crazy and exhausting.

A part of me felt this moral dilemma.  Even though it felt like a Twilight Zone episode, Ed was generally in a happy place, having great adventures.  I wondered if it was worth fighting for finding the cause of his delusions.  Did he want to come back and face his reality?  Ed gave me the answer. Every so often, he'd have a couple of hours of clarity.  He knew something was off.  He'd ask me where he was, how he got in his room.  We'd talk for a while and for a few hours, he'd be totally present.  He said he was tired of feeling crazy and wanted to get clear.  At that moment, we called his hospice nurse and Ed told him he wanted to find some way to make that happen.

Ed update:

He's no longer hallucinating.  He asked to stop his pain medication and was weaned off of methadone.  A day or two after the methadone was completely done, his hallucinations stopped.

His vitals are good.  This means his breathing and lung capacity are good.  His "input" and "output" are good :) :)  Which is code for he's eating a lot and ummm... getting rid of it normally.

He eats about 2500 calories a day.  For someone who doesn't move, this is a lot of food. He's gained close to 20 lbs since he arrived at the nursing home in December.  He was down to 160 and is now almost at 180.  This is a really good thing.  He is totally tube fed.  Once in a while, he has quite a craving. He tried one cheese nip of all things but choked on it.  He can eat jello and sometimes the innards of something like pumpkin or coconut cream pie.  He highly recommends Patti LaBelle sweet potato pies from WalMart.

When he was at home, he was choking and coughing on the junk in his throat.  Gunky saliva accumulating that he couldn't swallow.  This happened every day.  It was scary.  Now, this happens maybe once a week.  It's been amazing this cleared up as much as it did.

His voice is getting weaker.  We are figuring out ways to communicate once he loses his voice.  We both say how lucky we feel he's been able to talk all this time.

I feel lucky he's still here.  We were just talking today how he doesn't remember August through December.  He feels sad I have to remember.  I told him every time I feel guilty he's in a nursing home and not home with me, I remember what those months were like.  Now, he's cared for in a way I could not.  I have time to be his wife.

It's 1 a.m.  I'm in bed by myself typing this.  It's hard to fall asleep.  I don't like the quiet; it leaves too much space for my brain to think.  I miss Ed so much when we're not together. But you know what? A month ago, I missed Ed when I WAS with him.  I'll hold on to that the next time I drive home and feel that hole in my heart.  I have Ed back.

This was about a month ago for Ed's birthday.  I made him a memory box of his Air Force medals.

It's good to see him up and (sort of) smiling!

Sunday, March 12, 2017

Sunday night - March 12

Tonight, Ed woke up from a nap. He saw me and started crying. A true, heartfelt cry. I went to him and asked what was wrong.
He said he wakes up sometimes and can't find me. He gets so scared when he can't find me and realizes he's alone and doesn't know where he is.
I try so hard not to cry in front of him. How can my heart take this?
He said he is scared of his confusion. I told him he can call me anytime and he said he doesn't remember how to use the phone. I held his hand. I kissed him. I told him everyone at the nursing home is there to keep him safe. I told him I loved him. He asked me to be with him more.
Within five minutes, his moment of reality was over. He was talking about meat tv???? I had to leave the room to finish my cry.

Sunday, February 26, 2017

February update

It's been a month since I've written here.  What used to feel helpful - writing in this blog - now feels sad and hard.  I'm not sure if this is good?  Keeping things inside, not sharing or not feeling tends to create chaos and mess in my life.  Not good for Ed or me.

Lately things have just been too much.  It's exhausting.  I thought having him in the nursing home would give us both a renewed view of being husband/wife and not caregiver/patient. Instead, it's just a whole different host of crazy, sad feelings.

Ed's been hallucinating again.  Non-stop.  Last week, he had one super clear, "old" Ed day.  He was engaged, happy, talked about the future, had a list of things he wanted to get done that day.  The day after, he was still pretty lucid but so tired.  That burst of energy wiped him out.  By day 3, he was out of it and seeing monkeys across the street.

Ed's body is chugging away, so physically, he's relatively ok.  His breathing is good.  He's gained weight, which is great.  His appetite is great.  So all that is good news.  It's his brain that's failing him.

He's hallucinating the craziest things.  This morning when I called, he was at the golf course. His nurse was in the room and said he was having a good round.  He's seen a bird on my head, monkeys across the street, a cake plate on the ceiling, he doesn't remember me, he forgets how to use the phone.

This happened in September and October when he was at home; this got him to the VA for a month, which led him to the nursing home.  At the VA, his brain cleared up.

3 months later, he's back to these full out hallucinations.  No one seems to know what it is. At the VA it was a urinary tract infection.  Or maybe it was all the medications he's on.  They treated both down by giving him antibiotics and weaning him off all narcotics.

Now, at the nursing home, they say he doesn't have a urinary infection but are giving antibiotics anyways. Nursing home doc is reluctant to take away narcotics.

His hallucinations are fairly gentle, sometimes funny.  Once in a while, he gets paranoid but it's usually easy to direct his thinking in a different direction.  The thing is, it's exhausting. His brain is on overdrive.  He talks non-stop.  He gets frustrated if I don't understand.  Like the bird on my head. He was so mad I couldn't figure out how to get it off my head.  Apparently, I kept grabbing at it wrong.

Ed knows something's up.  He believes his version of what's in his head but he knows something's off.  Probably by the look on my face.  I try to go with the flow and pretend I actually do have ironing boards in my lap.  I try to remember it's the illness that makes him forget I'm his wife.

I cannot imagine how folks who care for their loved ones with Alzheimers do it.  The physical loss of ALS has been awful but lots of people deal with loss of mobility. There is technology and equipment and ADA laws for wheelchairs.  Ed felt some freedom when he could control his wheelchair.

Being bed-bound is a whole different thing and we're dealing with that.  When he's lucid, he's talking a bit about quality of life issues.  That's a whole different subject.  This loss of awareness, of memories, of time, people, place and space is so heartbreaking.  At times, I think it's good he doesn't remember he can't move.  Other times - and probably selfishly so - I want him back.

My biggest concern or question is - is this how it is now?  Are the hallucinations just the new normal? I can't imagine it is, considering the past circumstances.  I have this need to get him "fixed."  To keep advocating for his lucidity.  But I'm not quite sure what I'm fighting for anymore.

So that's the update.

Sunday, January 29, 2017

There's no space for fear...

Sunday night.  Got home from the  nursing home about an hour ago.  The ride home is always rough. I get a good cry.

Ed's ok.  He's not really his "old" self.  At the VA, for a time, he was.  He was clear, lucid, smart. This was in November.  Even he said he felt better, more like himself, than he had in a long, long time. Now, at the end of January, he's just ok.  Weaker for sure.  But I'm trying to figure out him.  Usually I think he's here with me - pretty lucid.  Sometimes, though, I'm not 100% sure.  

It's little things like not remembering I was with him the night before.  Or if it's night or day. He'll wonder when we're going someplace but doesn't know where.  I try to be gentle with the fact we're probably not going anywhere anytime soon.  

We tried last week - when it was warmer.  We were going to see a movie but when I got to the nursing home, he was freaked out.  I can read him so well now.  He had those scared eyes.  I told him it was ok - we didn't have to go.  Maybe a movie was too big for the first outing.  Maybe we just needed to get him in the van and drive a block and come back. We didn't go to the movie.

Mostly, it's all good.  Like in this picture.  We sit next to each other.  I hold his hand - like I'm his anchor and I keep him from floating away.  

Around 6 pm most every night - when it gets dark - he has a panic attack.  I can tell.  We'll be watching the news and suddenly, he's agitated. Making noise, moving his toes. 

Within minutes, he'll be panicked, shouting to get off the blankets, turn down the heat, move his arms around.  

I try to anticipate it without making too big a deal of it.   Rub his legs, his hands.  Brush his hair.   In the end though, we always end up with an extra dose of anxiety medication.  Maybe we should just start with that.

Ed's vitals are good - his blood pressure is a little high.  His breathing is good.  His attitude is actually really positive.  Tonight, he got his catheter pulled out.  It was, at first, pretty painful and gory.  The nurse asked why we had it and honestly, I couldn't remember. Hospice shoved it in him back in September and that led to hallucinations and the trip to the VA.  I honestly think hospice did it out of convenience.  Once he got bedbound, it was too hard to use a urinal.  We never had the conversation, though, about why.  And we never revisited the why.

Tonight, the nurse decided to take it out; it seemed painful and tender.  At first, it was awful to see Ed worry about whether he was going to wet the bed, see him in pain as he peed, it was hard to hear him say he didn't want to pee because it scared him.  

A few hours later, he woke up and was smiling.  He said he felt soooooo good!  It didn't hurt to pee, he didn't feel like he was connected to tubes, he felt pretty free wheeling!  I had to laugh - it made my heart happy to know that's the old Ed... he's still in there.   

I want him to feel loved, secure, comfortable.  I think he does.  I hope he does. We both have a great support system of friends and family.  

Time is weird.  I feel it breathing down my neck, like I don't have much time left with Ed.  

Our time is so limited.  He could be here another year, maybe more.  How lucky I will be if he is.  

But time at the nursing home almost stands still. It's quiet, we're quiet.

I used to be able to share my fears, concerns, dreams with Ed.  But now, that's too much.  It overloads Ed's sensibilities.  Instead, it's all about the moment - being present with him, making sure he's happy, peaceful, content.  I keep my fears, concerns, dreams to myself.  I think I can deal with things later.  When there's more space for those things.