As the bad weather approaches

Many people have told us that as the bad weather comes in that ALS patients heath goes down.  But so far Dan is stabilizing.  I love that.  I thought we had a problem but it turns out that I was putting him to bed to close to brushing his teeth.  He always drinks water then and the water was causing the choking.  So now that I figured it out and shifted when I brush his teeth not more choking sounds and no more gagging.  So far so good.  We have decorated for Christmas and He is loving out new outside lights.  We got the projector lights so no climbing and not hard at all to start and stop.  I love it, too!  Our tree is up and lite and that makes him happy, too.  I think we are going to be okay but we are not going to get out much and that really seems to help when it is cold outside.

Things keep changing

So while we were in Louisiana we found out that drinking Lemon water (its a natural diuretic) will keep the swelling off Dan's hands and feet.  In the beginning when we were first on Hospice we found out that Papaya juice will lower his phlegm.  Sounds like Dan needs to drink a lot of juice.  So I thought we were doing pretty good but I think I was just trying to not see the new signs.  It is so hard to see them and know that he is doing worse and there is nothing I can do about it.  Every night now he aspirates. He chokes and chokes and it is getting worse.  I will have the nurse check him out tomorrow and see if there is anything we can do.  He is talking less and less, he just doesn't have the air to do it. Once again I am watching him get worse and I have to adjust to something new and pray this is  not the thing that is going to kill him.  I want him to stay around until we are 90! I just want to grow old with this man of mine. 
    Today the weather was bad and I gave the decision to Danny whether he wanted to go to church or not.  I knew that letting him go out in the weather ups the chance of him getting pneumonia which is what kills most ALS patients.  I felt very strongly that when a spiritual question comes in that that decision needs to be made by the person.  So he had to decide.  When he woke up the weather was a little better but not great and he decided that he would rather stay home and be safe.  I will admit I was so glad.  I know it hurts him and makes him to sad to not go to church but I just want him around for a while.  When the ramp was icy I felt like I could just say no but when it was mostly clear it was his call. 
     He is doing more leaning so that is not good either.  It won't be long (we have been putting it off for weeks) before he has to stay in the hospital bed instead of going up the stairs on the lift due to safety.  I hate when that day comes.  My mom has been here for a few weeks and it has been wonderful.  She is so good with Dan and they sit around and she talks and he smiles.  I take a nap so it works for us all! :) 
     We are hanging in here and wondering what change tomorrow will bring.

Vacation to Louisiana and Mississippi

We had a wonderful vacation filled with people who loved him enough to come a ways to see him.  He loved being loved so much.  He really basked in the attention.  We saw people who we hadn't seen in forever.  I think that it is a case of they didn't want to wait until it was to late.  Plus, they realized that there might not be a tomorrow that they can see him in so they needed to do it today.  What a great lesson for us all to not put off until tomorrow what we should be doing today.  So if you have a dress you want to wear, a dish you want to try or use or anything else you are putting off. Stop it!! Do it now and enjoy your life!! 
   This week Dan went into the Neurologist for his check up, and found his reflexes are down from 2.8 to 1 something which of course is a concern.  When they tried to take his blood they couldn't get any out of his good arm after a few pokes gave up and went to the bad arm and got it there.  But that was a little concerning too.  His speech is going more everyday but he is learning to smile thru it which is great! I really hate when he is sad! I wish you could have seen his face as his sisters tried to figure out what he was saying and laughing with him.  He was really enjoying it.  Maybe we have reached a plateau there so he won't be so frustrated.  For some reason the last two weeks have seemed a touch easier.  I have found bed baths are hard but if I do it while he is on the toilet it is way easier! So we are adjusting to make things easier and anything that could do that is my friend these days.

Faith, a little goes a long way

Dan has decided finally that he can get well.  My problem with that is that his faith is in a little pill that isn't FDA approved.  They can't even use the name of the pill on their website.  That is not a good thing to me! But he is sure that little pill, with some fat, and a lot of water will make him well. I wish that faith was more in the Lord and less in a man's word.  He says that every time he prays to get well that, that is what the Lord tells him to take.  But he was sure that it would work from the beginning.  He took it for a while but it didn't seem to help back then but a little faith in said pill might make it work.  Who knows.  He did drop out of the clinical trials but that was because they just weren't helping him at all.  Matter of fact it seemed to make him get sicker faster. 
     We have had a hard week.  Between a biopsy, a breast lump, and a growth in my daughters uterus.  But we have had all good reports so far.  Dan's got a slight rattle in his chest and I have one more report to get thru and we are solid again.  We are excited that things are going so well.  We need that in our lives.

I am tired

No one warned me that this was going to be exhausting.  No one said it would be easy but I was not warned how hard it was going to be.  Some days I feel so weak that I don't know where I will get the energy for one more need.  Tonight I had to do all kinds of things for this man that I love that I never imagined doing for anyone.  It is a hard job taking care of him and gets harder every day.  Honestly I am just done.  I feel overwhelmed and so tired that I can't see straight.  Yet I am sitting here at 1 in the morning because I can't sleep.  I have realized that being tired and being sleepy are two totally different things.  Tonight was just a really hard night.  As he called me over and over and over for more and more needs.  I was sitting in our bedroom and he was in our bathroom.  He has pulled things like this before but it has always been when he was scared and he was afraid he was going to die alone or he just wanted to know he was not in the house alone.  This time I think he just wanted to see how many times I would come to the bathroom.  He finally has decided that it is almost time to move him to the hospital bed.  He can tell that Jeff is doing all he can and it is just barely enough.  It won't be long before Jeff can't pick him up anymore.  Then he will be in the hospital bed.  We will have to once again rearrange the house so that he can have what he wants and needs near by.  Another thing I realized today that at least one of our grand daughters are scared of him.  She was playing tea party across the room from him and when I told her she could ask him she looked at me like a scared rabbit.  I even helped her so she would relax or at least I hoped so.  But no go.  It is something I will have to work on.  Because I can tell by his face that it hurts him when they are scared of him.  So lesson of the week, talk to every one explain what is going on and why and most important explain that they can't catch anything and it won't hurt them even though it is hurting him.  We don't learn a lot of new things anymore since he is probably at his worst or at least pretty darn close.  He can't use any of his muscles.  His bladder, lungs and now bowels  are either not working or pretty close to done.  His tongue doesn't work so his speech is awful.  He tries to talk in paragraphs and I may catch one word.  I try to pay attention to where he is looking so that I have a guess but it only works once in a blue moon.  Next lesson- get everything signed early because that is hard enough without you having to sign a DNR for him or filling out his advance directive that says no machines for him.  It feels like I am signing his death warrant but it is how he feels and by the time we got hospice he had already made these decisions just hadn't signed anything.  So get it signed!  That is it for tonight I am going to try to get some sleep.  He changed from his bi-pap back to his c-pap and is noisy again but he can sleep better.  No rest for the weary but there is for the sick and since it makes him happier that makes my life a little easier. 

Here we are again

So here we are.  It has been a tough couple of weeks and I got a bit down last week.  I try not to because it makes things harder for us all.  I haven't been able to help as much since I have been sick.  But tomorrow is my procedure and hopefully the doctors will figure some things out and I will be back to work, helping Dan again.  He is a lot weaker, has a really hard time talking because he is out of air, and is using more tube feeding than ever.  He uses the tube twice a day and has a milkshake for breakfast.  He loves that part! :)  By the time I get done it is about 1100 calories which is still only half of what they want him to take in.  But I add Carnation instant breakfast, a protein drink, milk and then a lot of ice cream.  He really enjoys it.  I think he misses a regular breakfast but most things won't go down.  He just chokes and chokes.  It is really hard.  A couple of nights ago it sounded like he stopped breathing.  There was a couple of minutes there where I thought he was gone.  It scared me at first and then when we woke up the next morning and he was crying because he hurt so bad I realized that it would be a good thing for him not to have to hurt any more.  I hate that he is in pain and he hurts so bad some days that he shakes with it.  It is so hard, because I am trying as fast as I can to get his pain medicine in but it just doesn't seem fast enough.  So we are having out ups and downs, as usual.  By noon every day he is exhausted  and his speech is really airy.  It is really hard for him to communicate.  Every one keeps looking at me like I know what he is saying but I have no ideal!!  Some times I can get a word here or there but these days he gets frustrated with me but I really am doing the best I can.  I am home from having my procedure done and barely awake and he is already wanting me to get things done for him.  Sheesh! I am so tired but that doesn't stop his needs.  I better get back to work!

Not sure

When I first started this blog I had so much to say.  These days I have gotten so quiet.  You need to understand this is just not me.  I can go hours without saying a word in a room full of people.  As he gets quieter I am getting quieter too.  As I sat and watched General Conference today they spoke on the 3 apostles who had died and the strength they saw in two of their wives (one wife is already passed on).  I really stated thinking am I going to be that strong when it is Dan.  Am I going to truly be okay or am I going to be tired and bitter.  Will I spend all my time alone or will I get out and make friends, take a class, go to church? What am I going to be like? All I have ever been is Dan's wife.  I find myself getting so sad.  I started taking depression/stress medicine over a week ago.  I am not sure it is helping because I am so introspective today.  My biggest fear is will I feel like I didn't do something just right? Or if I had tried one more thing would it have worked? What about if I had talked him into going off those clinical trials would he have lived one more month/week/day? Will I have so much guilt that it will wipe me out? Or will my inner strength come thru and make me strong.  Will the strength that got me thru all those years of raising my kids while Dan worked crazy hours or while he was TDY or while he was out of town.  Will my faith sustain me? Will it make me whole? I am just not sure what will become of me or my family.  So I pray every day for courage and strength but will it be enough.  I don't know but as he gets sicker I pray harder.  I pray that I am making the right choices, that this is God's will, and that Dan is happy.  There is not much else I can do right now but pray it is enough.