Sunday, June 19, 2011

Why do we deny or look the other way when someone is diagnosed with AD?

Is there anyone that could possibly wrap there mind around the fact that you have AD? 
How difficult is it for a spouse or any family member to accept that fact?  We can tell you that it sometimes can be very difficult to accept.  There are too many questions about the disease to accept it readily.  It doesn't have a red rash that changes your face.  It doesn't make you limp, or bend over holding your belly in pain.  It doesn't make you talk funny or pull your face to one side.  You can't have your chest cut open and be repaired.  Your hair doesn't even fall out.  In the early years there is just no change that can be seen by casual encounters.  You can't visit once in a while and notice that your Dad, Brother, Son or Uncle has changed any.  He still cracks those silly little jokes that he always has.  He still loves playing with the children like he has all his life.  He still hands you a little bouquet of flowers or a pretty rock he found outside the exact same as he always has.  And yes he does get upset now and then as he always has.  The only reason that I saw any change in my husband was the fact that we were in our motor home traveling 24/7 and it was just the two of us and you notice everything.  I never thought that was the reason for our making a colossal change in 2008, but things have a way of working out.  If we had not chosen to live this way, who knows how long it might have been before I noticed the changes that were happening.  I feel certain that I would not have noticed for a long time. 
     We saw the changes that took place in his dear Uncle that was diagnosed around the same age as Gerry was at his diagnoses.  We didn't see him often but the times we did see him I noticed changes in him.  I think maybe I noticed what other people chose not to notice or admit it if they did.  I believed our Aunt when she told us that he has AD.  I noticed that he was still the same sweet, happy man that we always knew.  I noticed that when he saw people that he loved he reached out his arms and hugged them tightly and was so glad to see them,  but never called them by name.  I noticed that when he saw old friends or people from the church he smiled and shook their hand so warmly and patted their shoulder and told them he was so glad to see them, but he never called them by name.  I noticed that when we all were around eating and talking constantly he sat back and smiled and most of the time he would nod off and nap while everything went on around him.   He would sit and listen to the family talk about the old days and he would nod and smile and agree with anything they said, but he never had any story of his own to tell, he was happy just to be there among the people he knew that he loved and loved him.  I noticed how as time went on he clung to his wife and had to be near her no matter what. 
I wondered how she handled all the changes that she saw him go through during the 10 or so years since his diagnosis.  I know she loved him and clung to that love and to her faith in the Lord and had the support of her children and of the community.  What will I cling to as my husband goes down this road of living his life backward?  How will I deal with the changes that I will see in him?  That's what I need to learn - how to deal with the changes.
    So many people joke about it when they forget something or act silly and that's ok.  I just feel that to laugh it off when it is a serious matter is wrong.  We have found that a sense of humor helps in many instances.  I saw that too many family members denied the disease that took our Uncle.  Little did any of us know  just how many people in the family were going to be or already were affected by it.  We have learned that my husband's family has had this horrible disease afflict so many people, some we know had it, others we suspect had it by symptoms.  By now we do believe that it is a Genetic disease.  His Grandfather had 2 wives and 10 children by each wife.  Gerry is the only son of the eldest of the second 10 children.  From stories I've heard, Grandpa probably had AD, but was never diagnosed.  He lived to be 98 and suffered from Dementia for many years.  From the older set of children I only heard that one died from AD.  From the younger set, we know that a minimum of 3 have died from AD and there is a good possibility that 3 others may have. 
My husband's Mother has Dementia and has been on meds for seizures for several years.  AD has not been diagnosed but we spent 15 years living very close with her and I know that a lot of the symptoms of AD are present in her.  I've seen them first hand.  Of course those are also Dementia symptoms and I pray that is what it is.  Sadly we'll never know because Mom lives in a place that we can't visit and has been cut off from having contact with us.  This happened after my husbands diagnosis of AD.  I feel responsible for this and will share the blame, but will not carry it alone.  This is just as painful to my dear husband as it is for him to know that he is in a no win battle between himself and AD.

Saturday, June 18, 2011

Alzheimer Disease too Early in Life

   1.  This was the beginning but since then, we have learned so,much. Nevertheless, I’m so happy I did this from the beginning.  We were both in a bad place and we have come so far and learned so much, but still have questions. 2/15/2020

There is never a good time to have Alzheimer Disease.  But at age 63 or earlier it is more devastating than I could ever imagine.  I want to learn how to cope with this life thief in hopes of spending the next 10 years in happiness and hope rather than constant turmoil.  10 years may even be wishful thinking but that's just the thing when will it end, how long will this go on?  There's no cure.  The time frame is unknown.  All that we're sure of is that is will only get worse.
     In 2008 we sold everything and started out in our RV to travel and see the country and enjoy the good life.  Some people said we were crazy for doing it and to tell the truth - we were both scared about what might be out there for us.  But we were willing to take the chance and so we did.  We were told that the first 6 months would be the hardest.  During that time being together 24/7 in that small space we would learn a lot about each other.  We would either divorce or we would kill one another in that time or we might just make it.  That first six months was very hard and I did not think we'd make it and both of those things crossed my mind more than once.  I just wasn't sure where I'd dump the body.  During the 2nd 6 months it was a little easier and we started to relax.   As we traveled my navigation skills got worse, no matter what I read on the map or TomTom it seemed to be wrong.  But there seriously is a problem with any navigation system sometime.  We made too many wrong turns, too many dead ends.  This started to get to Gerry along with many other things.  I noticed he would rage at what I felt was the smallest thing.  He didn't seem to be as grounded as he normally was, he couldn't seem to understand why we would be going a certain direction when he felt we should be going another.  He screamed at he in a way he never did before and I was having a very difficult time understanding this.  I'm not saying that he never had a short fuse and a bit of a temper when things went wrong, but this was much worse.
     The day that I knew that something was really wrong was when we went to a small mall so that I could get a haircut.  He walked into the salon with me and said while I was having my hair done he would walk around the mall.  After a while he walked in and asked the lady who was sitting right in front of me if he could use her phone to call his wife's cell phone.  Even though my hair was cut I looked no different and was looking right at him.  I said to him "here I am".  It was like he looked through by me, I could tell he didn't recognize me at that moment.  He told the lady that he was sure this was where he left his wife but he couldn't find her and he pulled out his wallet to get the phone number that he kept written on a piece of paper.  At this point I realized he wasn't joking.  Of course being such a jokester all his life it was hard to know.  But something about this just seemed different.  Then he just turned and walked back out into the mall to look some more.  I watched him as he rambled around near the salon looking.  After a few minutes he came back in and asked the ladies if they knew where I had gone.  I told him to sit over there in the chair and wait and he just walked over and sat down, like a child waiting.    Later I asked him if he remembered what happened.  He said I couldn't find you in the mall.  I said I was sitting right there when you came in and he said he didn't see me.  I guess he noticed that I was worried so he said he was just kidding around with me, he knew what he was doing.  This was the first time I noticed his covering up for his actions.  He was aware that something wasn't right but I guess it scared him enough to try to dismiss it for my sake.  That was July 2009, he saw the doctor for the first time in August.  The doctor put him on Aricept right away.  That was the beginning.