The holidays

I never thought there would come a day that I didn't love Christmas.  A time to celebrate Christ birth.  But I would rather skip Thanksgiving and Christmas this year.  I am so sad and unhappy right now.  I really just want to call it done and not do anything.  I am sleeping super good these days, I know this because I sleep all the time! I know that it is not good for me but it is the only time when I am not overwhelmed and sad.  Holiday depression has hit in the worst possible way! My kids and I are all struggling.  I have a little granddaughter who lives here (with her parents) and so I have a tree up but every time I look at it I see the ornaments that Dan made.  It took such patience and work to make them perfect but every year he did it.  He was always the last one done and they are so beautiful.  I want to just throw them against the wall! But then years from now when I want to show them to others and I want to see them again they wouldn't be here.  I am in the Why me stage.  Why take my husband? What did I do that he had to suffer so? Then I remember that God is not like that.  But it is hard to remember when I am crying or one of my sweet babies are crying.  There are so many sad things around me that I want to just get rid of but life is not like that.  I will have memories surrounding me no matter what unless I want to knock down my house and have it all hauled away.  Life is not like that either.  I would still see his smiling face when he came in the door.  He was always so happy to be home.  I would still see his twinkling eyes when he laughed.  I would still picture the joy on his face when he heard a baby cry.  I am not sure why that made him so happy but it did.  I have all these awesome memories that I can look back on but mostly I see his broken body and hear him cry out in pain those final days.  I see his fear when he couldn't take a breath.  I see his eyes when his vision was going and I was all he could see or hear when his hearing was going.  I know his touch when it was all he hard.  When his hand was cupped and I slid mine into the cup and just held on so that he knew someone was there.  The days when I watched him breath on a monitor because I knew that one day soon he would stop.  I see him having seizures and thinking this is it and seeing him rally and thinking I get one more day with him.  That is all I can think, see and feel these days.  Not the good things that I was feeling until this holiday hit. 
      Last week one of my kids asked "wouldn't you love to have Dad back?" I said "No, I wouldn't" they were shocked.  I explained.  He is in Heaven and healthy and happy.  I wouldn't wish him back into a body that betrayed him.  He would have to go thru all that suffering again.  I wouldn't wish that on an enemy and definitely not on a man I love.  I want him to be where he is and having the joy that he is and serving the mission he always wanted to serve.  And I definitely don't want to watch him die again.  That is the worst thing in the world.  Someone recently asked me would I marry again.  I can honestly say I see why people would because I am so lonely.  Even in a room full of people I feel alone.  But unless I can be promised that I wouldn't have to go thru that again with someone else I care about I am not planning to ever marry again.

what I thought I knew vs what I know

I thought I was pretty smart.  I thought I was prepared.  I thought I was going to have enough money.  I thought that his pension would last me until SS started (turns out I have to wait until I am 62 which is 7 years from now).  I thought I was strong.  I thought I could handle anything I was a military wife for over 20 years.  I thought I had a handle on life.  I was so wrong!! I am not any of this.  I have had my eyes opened so widely.  I am not as smart as I thought I was, I was not as prepared to be this alone, I have some money but I don't know that it is going to last (probably not), His pension is nice but living on a thousand dollars a month is HARD.  Not only do I not have a handle on life I go days at a time where getting out of bed is so hard that I don't think I can do it one more day every day! Handling things alone was hard but I knew I could pick up the phone and the conversation would go something like this "honey something happened today (or the school called or whatever) and I need to talk to you and bounce some ideas off you" so I would tell him what happened and he would talk me down from my high horse and bring me back to my nice self.  Then we would figure out what to do and I would have to carry it out alone.  But I had someone to talk to, sounds off with, bounce ideas off of and I am lacking that now.  Some days I feel so small and many days I feel so alone.  I cry so easy now.  I had promised Dan I would be okay but I am not okay and some days I don't ever think I will be again.  These days I am just holding on and that is all I can do.  It is not easy being a widow and I don't wish it on anyone.  I read and study my scriptures regular and pray regular which should bring me back to me again one day but I don't think it will be any day soon.

Now I am the widow

Today is Danny's birthday.  I didn't think I would be writing on here anymore.  But I still want to keep a journal and this is the easiest way.  Plus I am still learning so many things.  First thing I learned was that all these first are hard!!  He died the day before Valentine's day so that day went by in a blur.  The fourth of July wasn't bad.  Mother's day was easy.  But father's day was awful!!  Our wedding anniversary was so hard.  Now I have made it to November which is OUR MONTH.  My birthday was last week, his is this week, our temple anniversary is next week with Thanksgiving the next.  There are a lot of first this month.  It feels so overwhelming! To much at one time and when I think about Christmas it makes me so sad.  Today a lot of our grandkids and kids were here.  It was really nice to be surrounded by love and we shared stories about Dan that we have decided is our new thing to do on his anniversary. 
     One of the things that is driving me crazy is "pity face" People look at me like I am dead too or as if I have an incurable disease.  "poor you, your husband died" "he was such a nice guy"  " what are you going to do now"  " are you dating yet" "You had a happy marriage so you are probably going to marry again soon"  "how are you getting thru" " Are you going to move" How much money do you have coming in now" Do you have insurance"  " how can you afford this/that" There is so many questions I have been asked.  Here are my answers "yes, he did" "yes, he was" "I have no idea what I am supposed to do now" "NO, I am not" "NO, I am not" "One day at a time" "I don't know" Enough, not really but it is no one elses business!" "yes, I do - health (from when he was in the military) dental and vision and life I have gotten since he died"  "I save for everything I need"  But I really want to say "I don't know to everything!!" There is just to many decisions to be made. They tell me that I am the matriarch.  But I have always shared all decision making with Dan.  Every thing we needed to know what to do was decided and done by both of us.  I made the decisions that every military wife has to when her husband to go and be gone for any length of time.  But it is not the same as making every decisions for months at a time.  It is not the same as not being able to pick up the phone and call your husband and talk it out until you could figure out what to do.  They say cooler heads will prevail.  But Dan was the cooler head.  When I was mad he talked me down.  Of course I did the same for him that is why two parents are always the best.  I still don't know what I am going to do without him but I am learning more every day and it really does get easier.  I know this because I don't cry every moment of every day any more. And that is an improvement!

My last post

This will be my last post.  My dear sweet husband passed away last Saturday 13 Feb 2016.  It was awful near the end. But the end was peaceful as he deserved. I am not sure how the next few years will go but until we are together again I will be okay.  He is now safe with a Father in Heaven who loves him as much if not more than I do.  The worst part was the last day.  Seeing him the last time, watching as they closed the casket, the full military honors was sweet but I cried so hard.  When they played taps my heart just broke.  He was buried on 20 Feb 2016.  That day will never leave my mind and I am sure will break my heart every year for years to come.  Yes, I know he is in a better place.  Yes, I still love him so much it hurts but I loved him enough to let him go and to promise him that I would be okay.  And I will honor that promise to the best of my abilities until the day we are together again. They tell me that this complete exhaustion that I feel is normal and part of the grieving process.  That the holidays will be the worst and to keep myself busy.  I have been busy for 18 months.  I just want to rest now.  I don't want to be in charge of anything, I don't want to be needed, I just want to mourn my dear sweet husband in my own way.  I would love to cover my head with a cover in our bed and to never get out.  I would love to never hear anyone call me "his widow" again.  I don't want to take his name off my checking account (but they tell me I have to) I don't want to see his death certificate but everyone wants a copy of it.  There are so many things I don't want to do but I will because I promised him "I will be okay" So that is my mantra for now "I am okay" and I will continue to tell myself this until it is true.   It may be next month or next year but there is some time in the future that I will be okay with all this.  I will never like it but I will be okay.

The End

Dan has passed on.  It was different than I thought it would be.  I guess I thought that because he was such an awesome man that none of it would be hard for him.  But it was.  But let me start at the beginning.  On Wednesday night when everyone was gone and it was just the two of us, which never happens anymore due to the fact it takes 2 to put him on the toilet.  We had a talk.  It was a good talk for both of us.  Things were said, straightened out, love was given and a lot of tears were shed.  It all started when I asked him "if you could do anything tonight what would it be?" I was thinking if he didn't have ALS but he took it as a serious question that it was and answer after some thought "he would go home" Home to our Father in Heaven.  Home where his hands, feet, and speech would work again.  Home to his mom and dad, to my dad, to his brothers and sisters, to my brother, HOME.  When he said he wanted to go home I knew exactly what he meant.  So I answered him "then go"  I told him "I love you and if you are staying just for me, don't!  Don't stay here in pain, don't stay here unhappy for him. I love you more than life itself so it hurts me to see you unhappy or struggling." We cried for 30 to 45 minutes and then finished the conversation.  I told him I understood that he was ready and that it was okay.  I was going to love him forever and that wouldn't stop even if we weren't side by side for a short while.  Within a couple of hours he had gotten a little worse.  By 2 am on Thursday he was sleeping peaceful so I did, too.  Thursday morning the CNA's showed up for his bath and he had changed some how.  They got him in his chair and his was wheezing.  He didn't sound good at all.  Ruby (CNA) called and told Tracy (LPN) she needed to get right on out to check him.  She got here as Ruby left.  Tracy said that he had a lot of bad signs.  She worked with him some and brought him some peace and comfort.  By Thursday night he was on what is called comfort care.  That means someone is here with us around the clock.  Or at least that is how it is supposed to work.  Friday night they said "he is sounding pretty good, his vitals are holding steady so we (meaning the nurse and her supervisor) are talking about just coming and checking on him every 4 hours." I asked her to stay until he woke up.  She did and saw a different picture.  She saw his struggle, his vitals changed, even his color changed.  She didn't leave.  But the next morning they left and we were set for the every 4 hour schedule.  Until the supervisor came out.  At that point I had worked with him for a couple of hours to ease his breathing and it just wasn't working.  She worked with him for 4 and a half more before she got him where he could rest.  We tried his chair which eased him for a while as Sam sat and held his hand (we had found in the days before that if I held his hand he was calmer), his bed and finally put him on his side and it eased. Kim sat down and held his hand then.  Which she continued to do off and on for the next few hours. Our nurse left with instructions on what medicine to give him and when.  Jeff and I noticed that his urine had turned black.  That is when we knew he wasn't going to rally from this one like he had all the others.  From then it didn't take all that long.  The focus had changed from keeping him alive to keeping him comfortable.  When they say "we just want to keep him comfortable" or when they just aren't hungry anymore this is all bad signs.  When their skin gets so thin they get pink marks (that could turn into bedsores if you are not really careful) in strange spots (like on his ear) this is not a good sign.  Their are so many that I wish I had known to look for.  So many that if someone had told me to look for them I could have been more ready.  Not that I wasn't because that last hour helped us all be ready.  He was suffering, he had turned down pain medicine the whole time but didn't in the end.  He wanted it then.  I had never wanted him to suffer.  I didn't want him to have any pain. It was what my prayers had been about.  When I realized he wasn't going to get well I had changed how I prayed.  I wanted him to go easy.  Like he lived his life slow and sweet.  But that wasn't to be.  At least not exactly.  Back to the bed.  Once he was on the bed and everything had eased it was such a blessing.  I was so glad that he was resting because he looked well when he was resting.  His color had changed back to normal, at least on his face.  And he didn't look scared.  Mostly he didn't seem to see us but recognized our voices and the feel of our hands.  Kim was holding his hand and had been listening to him breathe for hours.  It is what we did and had been doing for a while.  When she noticed that his breathing had slowed way down and gotten peaceful.  She could feel it happening from just before his breathing slowed. she looked up but couldn't find the words to call out to anyone.  But Scott looked up and saw that her face had changed and went in to see what was wrong.  He called Tamera, who called to Mandy, who called to Jeff and around the house the calls went.  Bill walked in the door and into the room with him just before he passed away.  He was surrounded by the family he loved more than life.  He had most of his kids with him. He wasn't alone and that had been on of his main concerns early in this illness.  Now comes the hard part for me.  I have to plan the funeral again, write an obit, and pick a tombstone and then plan a graveside service.  My dear sweet husband, the love of my life is gone and I don't know what I am going to do.  For the last 18 months we have been side by side, day in and day out. For the last 35 years I have been a wife to the most wonderful man I could have ever found on this earth.  Right now I don't know who I am or what I am going to do.  But in honor the God who loves me, my dad who raised me in the gospel, and Dan who told me to be happy and loved me as only he could do I will move forward on the path back to live with Heavenly Father and Dan and I will be together again.  I will be okay because I promised Dan I would be.  I will be okay because I still have our children and grandchildren by my side.  I will be okay because I am the daughter of a Heavenly Father who loves me.  Eventually I will be okay.

I am tired, more tired than I have ever been in my life

As we are nearing the end I can understand why he can only be so sick.  I am tired.  I am so tired I worry that I am forgetting something or not being as careful as I should be.  I am so tired that I often think that if I could sleep thru just one night I would be in Heaven.  Just one.  I hear new moms complaining about their baby waking them up every 2 hours all night.  I would love to sleep for 2 hours at a time.  But nope it is not to be.  He moans and groans all night.  One night I didn't sleep at all because I could see thru our monitor (I got a baby monitor where I can see and hear him) that he was turning his head to and fro as if in incredible pain.  But when I asked him the next day he said no that he wasn't hurting at all.  I think his pain tolerance is really high and his pain just doesn't wake him.  I am sitting here at 1 am listening to him moan/talk/sing.  I am not sure what the noise is supposed to be but it is a new one so I am scared it is bad.  I go to bed between 2 and 3 most days because he calms down some by then.  Then he wakes up during the night and then I finally get to hard sleep by about 7, you know when most people are getting up.  Sometimes I sleep on the couch the last couple of hours while he "watches" me.  He sleeps better when I am close and I get more sleep that way but the couch is so bad on my back.  To top it off I still have a cough so when I lay down I cough and cough.  Then that wakes me up.  So basically I am not sleeping good at all.  Last night I convinced Dan to take some pain medicine thinking that he would sleep better if he wasn't hurting and he did but then he wanted to sleep all day (which he does most days now anyway) but he refused to take it again tonight because he wants to go to church tomorrow.  So I gave him a bath tonight thinking he would sleep better but that is not to be because here I sit still listening to him. Tonight before he would calm down I had to look at his butt cheek.  He was sure there was something wrong with it.  The only thing wrong was that he had sat on the toilet to long so it had part of a red circle on it.  But I will have to keep an eye on it for a couple of days to make sure a bed sore doesn't become of it.  There are so many things to watch our for and do every day.  Day in and day out it is exhausting.  I can understand the other wives whose husbands have/ had ALS saying that they were exhausted by the end.  Because Jeff and I are both so tired.  Other people come in and seem to be bubbling with energy and I have to wonder I am just so tired that they just seem to bubble or have I changed so much that I have lost mine so theirs just seems so LARGE!  But they all seem to have waterfalls of energy and I feel like mine is a pond, never moving just going stale.  Well, I learned new stuff this week but I am just to tired to type more.  So have a great week and remember no matter what God knows who we are and loves us.  He knows my name and my needs and He thinks I can do this so I know I can.  I just have to face it one day at a time.

What does the end of the end mean? Respite care stinks!

Dan went in to see his ALS specialist last week just about he time I got super, super sick.  So I got to be in on the appointment thru the phone.  Doctor told us we are at the end of the end.  It will take anywhere for 1 week to 1 year.  Well, that gives me a lot of lea way.   I asked him if there was some thing I should watch for to call the doctor, nurse, 911 or anything? He said yes and gave me a list to which my answer to each was he already does that.  By the time he got to the end of the list I said
"oh" and he said call him if I had any questions or concerns.  When I asked him when we should make a follow-up appointment, he totally hesitated.  Then had Jeff make one for 10 May.  It is assumed he won't make it until then and if he does to make it a call in appointment.  He thinks Dan will either be gone or not able to come in for an appointment because he is to weak. 
     Due to me being sick we have had our first experience with hospice respite care. He hated it! I have often been told I spoil him.  But you know what after the last 4 days of respite care I realized every person who is loved deserves that not the cold place that he was just in.  We should all spoil those we love.  I couldn't believe that he came home sicker after being in "professional" care than he does when he is here with Jeff and I doing "the best" we can. He now has many bed sores (only gone 4 days!)  He hadn't had a bath the whole time.  The list of things that went wrong is so long!! If you have to put a family member in a "old folks home" keep watch on them.  Go every day and stay on top of visits.  I believe when they know someone is coming they take better care of your person.  I just want you to know we had people up there a LOT and yet still he didn't get the care he should have received.  He is home now, clean and napping in his chair where he belongs.  Yes I know his time is short but I have decided that I would rather he be here and me make a mistake that makes him sicker than have him stay one more moment in a place like that!!! I think my mistake would be made in love and he would be surrounded by people who love him more than life.   But I have gotten pretty good at this and don't make mistakes much any more.  I do the best I can and let love do the rest!

Progression and learning

Even after all this time I am still learning so much.  Our CNA is quick to say she learns more at our house than in college.  Dan has been running some fever pretty much every night and sometimes in the afternoon and evening too.  The on call nurse last night told me his rattle was gone (it has been there for 3 days and we haven't done anything to get rid of it since there is nothing you can do) and that fever was typical in ALS patients.  I am not sure I believe her in either case.  That just doesn't make sense.  I can't find anywhere where it says that he will run fever with ALS.  Well unless he has an infection.  She asked about him possibly having an UTI.  Well the urologist told us they would say that a lot.  He warned us that every time they don't know why someone with a catheter starts running a fever  they would blame a UTI.  He said seldom to never is that what it actually was.  We have seen 3 more urologist since then and they all said the same thing.  So I think since his urine is good color, no blood, no funny smell that a UTI is not the problem so I told her so. She said "well that makes sense"  So who knows what is going on.  In the mean time I am watching him and listening to him carefully so that I don't miss what someone is missing.  I know his time is short I can tell.  He also got a blessing the other day that said that he would soon be with his father and his Heavenly Father. Soon in the Lord's time could still be way out there but we have already made it way longer than everyone thought.  We are past our 6 months of Hospice.  That is all your are supposed to get.  But because he is still going downhill they had to re certify us or whatever it is called to keep us on.  But still he has made more than 6 months.  Dan has a doctors appointment next week with his specialist (the one we trust) and I am excited to hear what he has to say!

Nearing the end

I have found that even though we have talked about it for over a year and we have planned for it as it gets closer it gets harder.  I couldn't imagine it could or would get any harder but it has.  He is doing terrible and his breathing is so shallow.  He is sleeping A LOT!!  I think he is just exhausted from trying to breathe.  He had a seizure on Saturday night.  I didn't know what it was but he awoke with foam coming from his mouth (a lot!).  I cleaned his up and it was so cold he didn't get to go to church.  Single digit weather just doesn't seem like the time to go out for someone with weaker lungs.  But night fall he was coughing more.  Sunday night he had 3 seizures. One of which I saw which is the only reason I know what he was having.  Last night he only had 2 so I consider that a good thing.  He looked bad this morning and can barely stay awake these days so they have changed him to Qt10.  I understand that means a nurse every 12 hours and more CNA visits. Tonight there was a nurse here that checked him out and he looked a little better than this morning.  He is still super tired but his color is better.  I am pretty sure we are getting closer since he looks like it, breathes like it, and sleeps like it.  Tonight I asked some questions like what do I do if he dies? Who do I call? (hospice) What do I do then? (nothing they handle everything)  Who calls the funeral home? (they do) Will he need an autopsy? (no thank goodness). And many many more.  I am a planner I have to plan something to be happy.  So we are getting closer and I don't have to like it but it is getting here.

CPAP vs BiPap

     Dan used his BiPap for a short time.  He was using the one called a Trilology (sp?).  He really didn't like it but I made him give it a honest try.  He used it for a month or so and then refused one night.  He said no that he didn't want it anymore.  He was scared when he wore it that he would throw up and choke to death.  It also made him feel like he was suffocating.  He didn't like anything about it.  He said he would use his Cpap but never his Bipap again.  Well the only other thing he has totally refused was morphine.  He really didn't like how it made him feel and he made me promise to never give it to him again.  So when he refused the BiPap I didn't complain.  I explained to his hospice nurses how he felt and told them I wouldn't make him use it again.  I never want him to be afraid.  Now for this weeks problem- He can't turn it on any more.  You have to breathe and then it will automatically turn itself on.  He doesn't have enough breath to do that anymore.  So now I always give him a chance but he couldn't do it all week so I guess that is gone now.  
     He also can't get his mouth open enough to brush his teeth. So I use a sponge to get his mouth as clean as I can.  And then his lips are so dry the skin peels off or at least that is what it looks like so we use a sugar and a few drops of water to make a paste and then I use it to get all the old dry skin off.  So that it doesn't bother him.
     His skin is breaking down, too.  So we are working with bad elbows, heels and tailbone.  The hospice nurses have ordered us some new sheepskin heel covers, and some elbow covers.  They will hopefully help some.  I worry with him having so many sores on him.  But I am doing the best I can to keep the ones with holes doctored with antibiotic cream and bandaides.  And the ones that are not holes yet we keep skin protectant on.  It seems like things are happening so fast but he is still alive so I will keep doing my best for him and pray it is enough.
     We had a talk this week in which I assured him that I was going to be okay.  That he didn't need to worry about me.  I wanted him to relax and not worry about anything.  When it is his time to go I want him to go peacefully.  Everything I have read says that it makes a difference.  I will never want him to be in pain and I will never put myself before him.  I want the best for him so I want him to be okay no matter what.  The biggest lesson I learned was that we have to put others first.  If you love someone they should come first before all else.  I would never put my wants before his.  Love really is unselfish! Or at least the love we feel is!

This is Dan the day before Christmas.  He was watching us all play and watching me play with the grandkids.  I felt bad but he said it was okay that he just enjoyed watching me be happy.  He also says that with food.  We all feel bad eating in front of him but he said our enjoyment with food was enough for him.  If we wanted to we could join him for a can of Levity.  But that stuff doesn't smell like anything I would want to put in my mouth! Not that he didn't taste it first because he did.  Long before that was all he got to eat.  He said it wasn't bad, it is mostly corn products and that was his favorite food so maybe it is not that bad?