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!