35 years together

We have been married 35 years as of yesterday.  I am not going to say this last year has been easy or that it was a breeze and we are the happiest couple ever because it wasn't.  It has been a hard year.  Yes we still love each other but having one partner totally relying on the other is hard on them both.  Dan gets frustrated that his body doesn't work anymore and I get tired from doing so many things.  My life is out of control, my house is a mess, I never have enough time to get things done that need to be done, I am exhausted most of the time.  Up until now we have been so blessed and have what many call a perfect marriage.  I think that makes this even harder! We have breezed thru most years.  It was hard when one of our parents died and the year my brother died.  It was hard when we had to move but we moved a lot so it got easier.  It hasn't been perfect but this, this is real and it is hard.  So many people tell me I am so wonderful because I am sticking with him.  What on earth are they talking about I always think.  This isn't the time to walk away.  This is what your marriage vows talk about "for better or worse, for sicker or poorer."  This is sicker! This is it.  As I watch him getting sicker every day, getting weaker everyday, needing me more every day how could I walk away, he needs me and we love each other.  Many times I say "we had a bad day" because to me this is happening to both of us.  This disease doesn't just affect just Dan it hits him, me, our children and grandchildren. Even our little grandkids pray for Dan all the time.  One of the littlest prays "bless pawpaw, bless papaw" They all see that he is sick and getting weaker every day.  This is not a disease that you can hide or if you take the right medication you can live forever and nothing changes.  I wish he had one of those, or cancer where they could take it out and with chemo he could possibly get better.  But no, it's not like that.  There is no medication, there is no exercise, there is nothing that can change this.  It takes over his life, over my life it is out there eating away the motor neurons inside my husband's body.  The doctor says "you know this is going fast right?" Well, I am not stupid so yes I do know it.  I can see! Not that I want to but I can.  So here I am starting my 36th year as his wife with love in my heart and praying we will make it to our 36th anniversary.

Doesn't matter that I am sick

Things I have learned today.  It really doesn't matter how sick you get because you still have to take care of them.  There is no break, no time out, no off, no weekends, no holidays.  I worked as hard on Mother's day as I do every other day of the week.  It is the same as it was when my kids were little.  Life goes on everyday no matter what.  One day of the week is no different than any other.  I miss having Sundays as a day of rest. 
          What I learned today about ALS.  Things change fast.  So take the CNA when offered.  You will need them! You can't do it all yourself no matter what you think.  For the last year we have been trying to handle it our selves.  I was raised to believe that you took care of yourself.  It was no one else's responsibility to help you.  You can't do it by yourself.  This is a BIG illness and it takes a lot of energy, and there is a lot of doctor's appointments, and a lot of needs to be met.  Most insurances cover a CNA and she/he knows how to do all those things you don't.  If nothing else let them teach you so that you don't hurt your back.  I am pretty sure mine is going quick because I really don't know what I am doing.  I am learning as I go and many times someone will say "why are you doing it that way, try this way" and it will be so much easier!!  Ask questions!! And let people help you! I know it will be hard but I think I would be dead if I hadn't had my brother here.  He and my son in-law have done a ton to help.  When Dan got to where he couldn't do the stairs they literally walked his feet on them while the other one held him upright. 
         What I learned otherwise.  Plan their funeral.  I am sure you have heard it more than once and I am sure you thought as I did "Stop saying that he is not dying yet" or "We don't need that yet"  But it really did give me one thing I didn't have to worry about.  And right now, one thing is a LOT!
         We are living day by day.  It is not easy and I am just trying to stay ahead of the curve ball most days.  Today is a bad day it started that way and hardly ever changes once it gets started that way.  I just hold on for tomorrow and hope it will be a better one.  He took a few real steps with the help of a walker yesterday.  That was really big so I will take a bad day today for a few more good days in return.

Some days are hard on all of us

Yesterday was a hard morning for Dan.  Some days are like that.  I have found that we have no clue whether or not tomorrow is going to be a hard day.  He just wakes up like that.  I think that Dan is just trying to keep me on my toes.  But last night he was able to get out of the bathroom without help and used big steps.  Well, big for him anyway.  He hasn't done that in a while.  Things like that are so hard for me because they give me hope that we are going to get thru this and that he is going to live for a long time.  Then he will have another major setback, and it is usually the next day or the day after.  So now I live in fear of what it is going to be.  All I want is my dear, sweet do anything for anyone husband back.  Not this angry, sometimes mean fellow who has taken his place.  And I get it.  I don't want anyone to think I don't but it is so hard to set apart the man who is sick for the first time in his life and having a really hard time dealing with what is happening to his body to my awesome husband who never would have yelled at me.  I have to consciously think "this is not my husband it is his illness" but when I don't think it fast enough then I get my feelings hurt and that starts a really hard cycle to get out of.  Usually takes me a day or two and I always want to snap back at him "I am doing the best I can" or "I do everything for you why isn't that enough".  But why say anything since it won't change anything and it will just upset him. And he cries so easily.  Bless his heart it is hard for him to not cry.  Yesterday at church there was a lot of our old friends there and he cried a lot.  Seeing them as they came over to shake his hand or give him a hug made his day.  He was so happy but the tears came.  He also laughs easily and once he gets started he has trouble stopping.  He and our youngest get going and set each other off.  The worst part is his little boy attitude like "letting gas" really tickles him or the other day he pooped in his pants and that really tickled him.  All the while he was saying sorry he laughed.  Makes it hard to believe him.
          ALS lesson of the week.  A Hoyer lift is great but wow is it hard to use.  Order it early so you can have time to practice.  I practiced on my son in-law and even with him being able to move it still took me 6 tries to get him to where he would move like he is supposed to.  It works much better if it is not on carpet.  We are going to use one of the plastic things for the floor that Dan used his computer chair on.  We are going to get the biggest one we can find.  We were told we could use plywood but then I would have to wear shoes all the time.  And I hate shoes but I hate splinters even more!
          Lesson learned this week about death.  I found out that if your spouse has served in the military you can have them cremated for free and they will then put them in a vault at Leavenworth for free.  And did you know that they charge you per pound to cremate? A friend of mine just had to go thru that and at the last minute found out the military would take care of it. Thank goodness since they were going to charge her over a thousand to cremate him since he was so heavy.  He had swollen up the last couple of weeks.  BTW: He didn't have ALS.  Not sure if they swell or not and I am not looking forward to finding out. 
       

Surprises around every turn

I started my day so grouchy! I don't really like mornings at all but Dan had an appointment at 830 at the VA so I had to get up at 645 and after not sleeping well last night I was grouchy! Then He had trouble sitting up so every time I let go of him he would start to fall over so I would have to stop and catch him to keep him from getting hurt (he was sitting on the bed so he wouldn't have I just panic easy these days).  Sheesh it was so aggravating! But some days are like this.  Now we have to wonder for the next couple of days it he going to have trouble sitting up tomorrow? Is he going to have trouble from now on or in a few days will he be able to sit up again.  That is what ALS does it leaves you wondering every day if this is the end of something big.  He shakes when he walks more than a couple of feet (with his walker of course).   And that is getting worse every day. Last week he could walk across a room now trying to get to the bathroom is an issue so he uses the urinal every time except when he is having a bowel movement.  That has happened in the last month.  Back in March his chest starting hurting again, it had back in December while we were in Louisiana visiting family.  That time he had bronchitis.  We were afraid it was pneumonia and that is a really bad thing.  I asked him to go to the doctor and as it got worse to the ER.  I think he is sick of doctors because I got the "no it will be ok" line.  Finally he gave in since the pain was so bad he couldn't stand it anymore.  So off we went and it turned out to be a blood clot in his lung.  So that added even more meds to his criteria.  He was in the hospital for 3 days.  It was his first hospital stay.  They assured me there would be more. When I ask about how he is doing sometimes I am told "he is not dying yet."  Well, sheesh I knew that.  But some days I just need reassurance. So a couple of months ago I went online to see if he was close to anyone else's schedule of if it was as fast as it seems.  There was nothing.  This disease hits everyone differently. There is no schedule or even estimates! We have no idea what will hit or when.  We don't know if we will get something new any days or ever days.   I wish I was bigger/stronger/smarter or something because I often think a different person could help him better.  Who knows how or why but here we are and I will do the best I can as long as I can. 

Things we have learned

One of the first lessons we learned was when something changes in your body it is a good idea to go to the doctor.  He didn't go in in the beginning because 1- he just doesn't like to go to the doctor and 2- we figured it was something simple.  He had never been sick! Not ever and I just want to add in here that he is not good at it! :)  We have been married 35 years next month and in that time he had a couple of headaches that lasted 15 minutes (literally) and the Eifel crud (which is like the flu but your body is getting used to living on the top of the mountain after living sea level all your life). 
     Next thing we learned was that if you have served in the military more than 90 days they take full responsibility for ALS.  Not sure why but Congress passed a law. So we got 100% disability and PVA advocates for us to get big things we need.  Like they are helping us get a grant that will pay for a van for Dan to use with his electric wheelchair. The VA has already gotten us our wheelchair.  The van grant is a LOT of paperwork! But we have everything in now and hopefully we will get it back soon.  BTW: If you have been turned down before and have ALS the law changed back in February and you can get one now without having to have loss of limb.  Which wasn't the case before. 
      Next thing was that the VA would have put our stair climber in if Dan had been able to get up and down from a chair by himself but he didn't need it then.  Once he needed it (because he couldn't get up and down the stairs by himself anymore) then they wouldn't do it.  So we had to pay for it by ourselves.  So online we went.  We found that you can get a used one and it doesn't matter why the more expensive sites say my brother, Jeff was able to install it in under 2 hours and he had never seen one before.  So it is super easy! The more expensive and new sites say that you have to have a professional install it and want to charge you a LOT of money for that privilege.  We measured it ourselves and told the store on the phone and within 10 days had it at our house and installed.  It cost us $1440 for the climber, shipping and sales tax.  We got the acron120 and it works awesome. We called 800-7901635  which is Ameriglide in NC. Dan loves the freedom and I love being able to get him up and down the stairs by myself again.
     We are still waiting for the adjustments to our house to be made so he is on the main floor.  This will include a wheel chair lift to get him from the family room, which we are making into a bedroom to the kitchen, living room floor.  Another thing we learned was A- this takes a while to get everything done for it and B- It is better to adjust your home if you can.  By the time we had we out and looked at other houses for over a month we realized that finding one that was already handicap accessible was almost impossible and next that we were going to put the same money in to adjust a new one as to adjust ours.  Plus I don't have to try to move my husband.  And since I already have so many changes I don't have to add another one.  I also got to keep my support system, my church groups, and my home.  Since VA is giving us a grant for that too we are doing the paperwork on that one too. 
     Last thing I learned recently Patience truly is a virtue.  Dan is moving slower and I am having to learn to walk slower, be more patient when he talks, and wait for him to be ready to do what ever. Things I never thought I would do, I do such as wiping his nose, itching his underarm, picking him up (yes you do need a gaitbelt!), and putting his medication in his mouth, brushing his teeth showering him, wiping his behind.  It is not easy but I love him and you do these things for the person you love..  Things I never thought would ever happen to him has and by extension to me.  I am learning more every day!

It's been a year since the first symtom

In March 2014 we had went on a family vacation and had a wonderful time.  Everything was perfect! Then it all hit! It has been a year now since his first "weak spell".  He thought that it was his medicine for his cholesterol causing some trouble and the doctor changed them but it didn't help.  That was in April of last year.  Oh my goodness, what a difference a year makes! By the second week in May he had fallen in my sisters yard.  We still chalked it up to "he stumbled". By the end of May he had fallen again helping our daughter, Kim unload her mattress.  Then we knew something wasn't right.  So off to the doctor he went.  At first they thought it was MS.  We thought that was the worst news we could get! We were so wrong.  He went to the first Neurologist after waiting almost a month for insurance approval.  After he saw Dr. Lehman (who was also my neurologist) one visit we were told that he no longer took our insurance.  So then we began again.  But this time while we waited our primary doctor ordered a bunch of test, cat scans, MRI's, x-rays, blood test.  Then we found out that it wasn't MS.  I will admit that we had a party we were so excited! :)  We thought we could handle anything else that was placed before us.  We were so mistaken.  He got worse still.  So then we talked to our Bishop at church (who is an ER doctor) to get a recommendation for another neurologist.  He told us to see Arthur Allen.  So we finally got to see the other Neurologist (and yes we did use Dr. Allen) and he said he suspected it was ALS but that there was one more test to do.  So we scheduled another visit for a couple of weeks down the road to do the EMG.  In the meantime we worried and worried and cried.  We cried a lot. He went in and got the EMG and it said for sure or as sure as a diagnosis for ALS can be.  Then we were scheduled to go over to KU to see the top specialist in the area.  The Sunday before we got his final diagnosis I remember crying to the Lord with all my heart that this wasn't what was wrong. I remember pleading for help and I remember hearing a soft voice saying that he had ALS.  That it would be our cross to bear.  That I needed to accept it because I needed to save my energy for all that was to come.  Our youngest daughter, Samantha was getting married in the temple the week we found out.  It was between her Thursday big day and her Saturday wedding.  That Friday that should have been one of our happiest days was full of tears.  We tried to put on a happy face for her. 
                 It was now August 15, 2014 and we were getting our second opinion.  We both sat and listened as they told us "This is a fatal illness" "You are going to die" "The odds are that you will die between 2-4 years" "You need to make plans" "Do you understand what I am saying?" We sat there and just looked at him.  We had cried so much at this point.  He talked to us about ALS for over 30 minutes while looking at us strangely.  Finally Dan leaned over and whispered "Baby, Can you shed a couple of tears I think he will keep talking until one of us cry,"  We both smiled then and I am pretty sure Doctor Statland thought we were crazy.  But we made it thru the appointment by holding on to each other and our faith.  Looking back I can see why he thought we were crazy and why he was waiting for us to cry but we had had weeks to come to realization that this was it for us.  This was going to be our life for now. 
           We have learned so many things! We learned that you have to be a mind reader to know what it going to happen next.  That everyday is a new surprise.  That you can make it thru this with your faith intact but you have to hold on with both hands.  We learned that we have to rely more and more on outside help.  Something I never thought we would need because we have always relied on each other.  And I have learned that we have so many, many people who  want to help us because they love us.  Next blog will be what happened when.  But just so you know the doctors say my husband is progressing fast and your loved one may not.