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.  

Thursday, January 12, 2017


This feeling, this lonely sad feeling is hard to describe.  It's consuming.  I think it's ok.  I've tried to push it aside, thought about re-engaging with the world.  But I can't.  I want to spend every moment with Ed.  I feel a shift in his demeanor.  Something is lurking around the corner.  I know it.  We've been through this enough in the last 3 years that I see the signs.

But what?  What's left for Ed to lose?  He's totally immobile.  He can't move his head anymore.  He can't eat anymore.  The next thing for him to lose is his voice.  The thing that's kept us connected for the last 3 years.  I get to hear that he loves me.  He can tell me what hurts, what he needs.  I've become obsessed this past week with what happens when he loses his voice.

We met with our speech therapist today to see what kind of technology is available.  We know there are programs out there which will allow Ed to "talk."  My worry is his energy level.  It's gotten harder for him to sit up in his wheelchair.  It's hard to use the computer in bed because his head doesn't move.  It takes a lot of brain power to concentrate on the program and sometimes, Ed just doesn't have it.

So what happens when he can no longer communicate?  I don't have the answer.  We're still working on the computer... we'll see how that goes.

I wonder if I'm being too negative?  Looking for signs that aren't there?  Whatever is going to happen just will happen.  I can't prevent it.  Even when I gear myself up for something, I'm still surprised when it happens.  Heartbroken.  How must Ed feel??

We're at a point where I can't really talk to him about it.  We used to.  Now he seems far away.  If you sat with him, he'd be fine.  Quiet, maybe.  Or he might fall asleep as you talk with him.  Lots of drugs, I think.   No energy.  Plus I don't want to talk to Ed about sad things.  I want him to feel love and happy and comfort.  I spend lots of time touching him, massaging his swollen, heavy arms and legs.  We don't talk much.  We did a crossword puzzle about a week ago and it made him anxious.

This is hard.  It's going to get harder.

I think it's ok to be this sad.  To mourn the loss of our relationship, the loss of having him here at home.  It's amazingly scary how easy the tears just flow.  Sometimes it feels good to let it out.  Other times, the sadness is too much.  I hope if I get it out now, when he dies, I won't have any tears left.


This is the question I just asked my online ALS group:

I've been thinking about this a lot the last couple of weeks. Our ALS doc discussed end of life with us way back when end of life seemed far off. Back in the day when we were worried about other stuff like losing his job or his legs. Our doctor said my husband has control over when he wants to die. He'd stop tube feedings. It's up to him/us - along with input from the doctor - when this happens. I keep hoping he'll just pass peacefully. And maybe he will. We have an advanced directive but it never included this locked in scenario. We're getting closer to it. He's completely immobile, recently lost use of his head. He's tube fed but he can talk. His voice is going. We're in the process of getting an eye gaze system. That being said, he's so tired. He's rarely in his wheelchair anymore. I worry about his lack of energy in order to use a communication program. I guess my question is - have you thought through this scenario? Once bedbound and locked in, what next? We've discussed some of it -- but not really pinning it down. Can it be pinned down!?? If he's unable to communicate, how will I know? Ugh. Tears. I hate this.

These are the thoughts that keep me up.

Monday, December 19, 2016

I miss Ed

I haven't written here in a long time.  Not sure why.  In the past, it's been cathartic.  A release of all the sadness, chaos, anger held in my head. My heart.

Lately, though, writing feels too heavy.  A rehash of the shit.  Or maybe... I don't know.... I'm not superstitious but Ed's ok now.  If I write stuff, will I upset the balance??

Nah.  I'm just too tired to write these days.  Tonight, though, I'm restless.  Sad.

For the past month, I've been in this weird limbo stage.  Ha!  As I wrote that, it occurs to me - what am I saying?  This past three years has been life in limbo.  I guess what I mean is Ed's relatively ok after an awful three months.  You've been on this roller coaster ride with me.  How many times did I think he was near death?  And now, he's stable.  He's lucid.  We laugh, kiss, have good conversations, do crossword puzzles.  I decorated his room for Christmas.

Yep.  He's at a nursing home.  "Living facility."  A rehab / hospice center.  Really, it's a warehouse for old people.  It smells gross.  There are lots of odd noises.  Lonely people.  We really need a new system for elder care.  You just don't think about it until you get old, I guess.  Or have a loved one hanging out there.

Ed was checked in to the VA hospital in early November after an insane September and October.  He was in the VA hospital for a month wheb we realized it was going to be too hard to bring him home. The guilt I carry over this weighs heavy.   Who puts their spouse in a nursing home, for God's sake?  I did.

My parents were amazing during this couple of months leading up to Ed being checked in to the VA. Although we had home health care and hospice, 25 hours a week just wasn't enough.  I couldn't turn Ed by myself.  He's in diapers - we call them briefs but they're adult diapers.  Dad would turn him, I'd clean him.  Ed was out of it.  We were tired.  It'd try to get Ed out of bed by myself using the lift. This is a job that both the VA and the nursing home won't allow one person to do.  I just laugh about that now.

In September and October, I was shoving drugs in to him at a crazy rate.  Morphine, hydromorphone, ativan.  Crushing up pills because he couldn't swallow anymore.  Using liquid versions.  Even injecting him with these huge needles.  It was insane. I'd be up at 3 a.m. with no sleep, trying to remember what to give him.

A new nurse showed up every other day, changing his plan of care.  One day, another new one showed up and shoved a catheter in to him.  Uhhh - what?  Now what?  Three days later, his penis is infected and full of green goo and the hallucinations he had randomly in the past become ramped up to 24/7 within the week.

Clearly, being at home with me as his nurse wasn't working.

Ed was in the VA for the entire month of November.  The first two weeks, he was still hallucinating. The last two, he was back to the "old" Ed.  Funny, smart, totally in the present, making plans for the future.  It was then we realized I was back to the "old" Lynn.  I was his wife.  I remembered why I fell in love with Ed.  We both felt lucky we had this second chance.

Making a decision to put him in a nursing home wasn't that difficult when we looked at it objectively. The thing is, my heart isn't all that objective as I sit here tonight.

I miss my husband.  All of it.  I want him laying here next to me.  His arms wrapped around me.  I want to wake up with him, complain about how cold it is and see us both off to work. Instead, I'm alone.

Each time I leave Ed, I walk down this long hallway.  Out the door.  I get in the car and cry.  I usually spend 8 - 10 hours there.  Just sitting with him.  I've tried to spend less time there but it's hard to be away from him.  I keep thinking I should try to start finding more time for myself.  Lead a more normal life now that he's being cared for by others.  But that hurts my heart too much.  I'll have a lot of time for my "normal life" when he's dead.  Right now, I just want to be with him.

Maybe it's the holidays.  Maybe it's because, after a month of Ed being Ed, tonight he was in pain, he was more drugged up than usual.  Maybe it's because I'm lonely, sitting here in the dark, wishing I could feel my husband's presence.

Most of the time I'm grateful.  Grateful he's still here with me.  Grateful my parents support us so openly. Grateful for my friends and family who give me the space to figure this out.  Oddly grateful Ed has a disease that's given us time to say our goodbyes.  Given us time to create some really good memories.

I try to keep things in perspective. Lots of people have loss.  Are caregivers. Deal with things much worse than this.  Sometimes that perspective helps me stay focused on the good things in my life.  In our life.

Tonight though, my robot heart is weak and sad.  My skinny, sick husband is alone.  He can't move. He waits up to two hours for someone to respond to his call button.  He takes pleasure in eating jello. I wonder how I can be grateful for that?  I sit here, alone.  I can't seem to stop crying.  The depth of sadness and loneliness I have in my heart is too much.

Tomorrow's a new day.  Another day to hang out with him.  Fill my heart back up.