Archive for March, 2013

Lightening Bolt

 Glacier National Park, 2009.

Glacier National Park, 2009.

We are watching a basketball game as a family.  Frances has her head on my shoulder and Brad is laying on my lap.  We are just having some relaxing family time and I love it.  I am tired, having fixed a nice dinner and we have nothing on the schedule for the next day.  Nice.

There is a controversial play in the game we are watching.  They show a replay and discuss the call.  Then they show the play again and again.  Jim pipes up, “ wow. Same play.” I have to explain to him, “that is a replay.

He remembers the previous play well enough to know the next play he sees on TV is the same one, but isn’t quite with it enough to realize it is a replay they are showing.

So, I come to the crossroads.  Just let him say these things and NOT correct him, or whenever he says something that isn’t correct, let him know.

Some would say to just let it slide.  Some argue that would be mean and would be humiliating and would be bad for him. It is a debate I have fought within my own mind time after time after time.

For years I have corrected him and gotten frustrated and yelled and threw tantrums in response to his ineptness.  Then after, I would feel guilty and just fall into a depression that would take enormous effort to climb out of .

Not too long ago, I had one of those life changing “AHA” moments.  I couldn’t understand why I continued to get on Jim.  What does it matter if he can’t recall if he bought milk at the store or not?  Why do I have to get upset if he can’t remember if he took a shower today?

That was completely taking over my psyche.  I mean, I was really beating myself up.  Just let it go Karen.  You know why he is like this. Just love and support him and ignore his goof ups.

But I couldn’t.  The constant battle in my head was really wearing on me.

That was when I finally had one of those life changing realizations:

If I stop correcting him and getting on him, I have given up.

That hit me like a bolt of lightening.

I am not a quitter.  I have a very competitive nature.  My first instinct with Jim or my kids or really anything that is a challenge: what is the solution and how can we beat this?  How can we win?

With this sudden realization, I came to understand my natural instinct is to treat him the same as always.  To treat him as if he SHOULD be remembering and knowing what is going on and being able to figure out.

When I stop expecting him to be himself, I have quit.  I have given up.  Then we really don’t have any chance.  Then I am not expecting anything from him or hoping for a miracle.

But I am not sure that justifies the constant corrections.  How does it affect the kids when they see me correcting their father all the time? I am realizing there is a fine line and a better way.  It is a slow process and while I must accept his changes, I must also accept my frailties and my inability to let the old Jim go.  I am not ready to let him go and so I still fight for him.  I believe with all of my heart that he is fighting, in his own way, he is struggling to remain the Jim of old.  I will continue to fight with him, just not at him.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comment (1)

Happy One Month Anniversary

Today marks one month since releasing my inner thoughts, feelings, shortcomings and emotional roller coaster to the world.  One month ago today I took a deep breath and with the encouragement of a wonderful friend, pressed the button that had the opportunity to help me rise or help me fall even further.

What an amazing venture this has been so far!  Missing Jim has had over 2,600 visits and almost 10,000 page views.  I don’t pretend to be an expert and I am not really completely sure what those numbers mean.  But those in the know seem to be happy and impressed and tell me that is really awesome.  So, I think it is a great start and I am so grateful to all of you that have read our story, have shared our story and who have felt compelled to share your story and words of encouragement.

My parents were just here this past weekend for a visit.  I asked them if they had read the blog.  They had.  They had cried.  They are proud of me.  They think there is a book in all of this.

But the one thing my father told me before he left that struck me as being a direct correlation to writing this all out for the world to take in: “You seem to be handling all this better.  You seem to be doing better.”

Hmmmm.  I am not sure I feel better on the inside, but isn’t it a start to look better on the outside?  Won’t the inside follow suite?  Just like smiling when you talk on the phone or looking in the mirror and smiling at yourself.  Doesn’t that make you smile on the inside? Doesn’t it make you actually happier?

Frances bringing in sunshine to the world.

Frances is a ray of sunshine, 2008.
Courtesy of Patti Brown Photography.

Thank you for helping me look better on the outside.  I need that. I will be better on the inside too.

I love your stories, your questions and your support.  Thank you.  Please keep asking me questions.  I will answer them as best I can.  Please keep sharing your stories, I have been so touched and moved by the outpouring of faith and support from so many of you that are traveling this same road.

There have also been a couple of other BIG things that have possibly come out of this blog.  I am so excited to share them with you as soon as I can.  One deals with treatments for Jim and the other is a possible way for us to take his dream vacation to Alaska this summer.

Stay tuned…

 

posted by Karen in Uncategorized,Younger Onset Alzheimer's Disease and have No Comments

Do I have to YELL?

Bradley's 2nd Birthday.  I love this picture of us.

Bradley’s 2nd Birthday. I love this picture of us.

Today was our son Brad’s 9th birthday. It is AMAZING how children change your life.  You go through this world concerned about tons of things.  Most of them revolve around you. I believe it is called self-centeredness.  Then you have this little, breathing creature that you are responsible for.  This beautiful, warm, fragile being that looks at you with the most loving eyes that say “thank you for having me” as you hold them in your arms.

Brad loves sports.  He loves being outside.  He loves being active and has a great sense of humor.  He makes me proud, frustrated, entertained and worried all in the same beat.

I have asked every neurologist that might have an answer the same question: “What can we do now to help prevent the kids from getting Alzheimer’s when they are older?”

Since it seems to run in Jim’s family, this is a huge concern.  Wait, it is more than a huge concern.  It is with me every waking moment of my life. Sometimes, the thought of the 50/50 odds my two children have takes every ounce of breath out of my lungs. With two kids having  50/50 odds, my odds of missing that bandwagon are very, very slim. It is one of the driving forces behind my desire to start this blog, raise awareness and raise money for research.

Back to how we can prevent this or maybe lessen the odds; no boxing, no football, no soccer and no hitting their heads.  What does Brad want to play?  Football and soccer. But that is another blog post. As luck (which I seem to have used up when I married Jim) would have it, Brad finds a way to hit his head EVERY week.  Without fail.  At school, at a friends’ home, playing in the yard, playing in his room, it doesn’t matter.  Stitches, bruises, scratches, bumps and lumps. We’ve seen them all. Each time it is as if I have hit my own head but a hundred times worse.

Tonight, he was jumping around the living room excited about his birthday. He jumped onto the couch and wacked his head on the arm of the couch.  Ice on it.  Bump coming up.  Tears on my sleeve. Worry in my heart.

Last week, when he somehow managed to almost give himself a concussion on my knee, I snapped.  As his tears were welling, I was yelling.  “Brad, STOP hitting your head!!!  Please! STOP HITTING YOUR HEAD!!” What mother in her right mind yells at her child for hitting his head when he is obviously in pain and hurting?  First, I don’t think I am in my right mind.  Second, a mother that is aiming to protect her child from something that may or may not be in the stars. Yet there is a feeling of a meteor that is constantly orbiting around our universe. Will it fall and hit us?

Brad's 3rd Birthday.

Brad’s 3rd Birthday.

When Brad was in first grade, there were two poles in the middle of his classroom.  Sure enough, he hit one, not once, but twice. Each time he ended up with a huge bump.  It was so frustrating knowing I need to keep him from hitting his head, speaking with the school to remedy two large metal poles in the middle of his classroom; but not seeing any action until months later when another parent complained and came up with a solution. At the time, I wasn’t ready to speak out loud that the more he hits his head, the greater his chances are of….  OF…

I still knot up trying to put it all into a sentence.

I remember not only the frustration, but the insane desire to just yell.  Yell that his father has Alzheimer’s Disease and my beautiful baby boy that is so smart and so fun and full of life might one day follow in his father’s footsteps and they needed to fix the damn poles!

Why shouldn’t the school immediately put foam around poles in a first grade classroom without me having to explain to them “our situation” ? It isn’t just the school dealing with the poles.  It is society in general expecting passivity, while I feel the tremendous pull of a mother’s love guiding me in a completely different direction. The path of standing up and being heard and making people listen and understand.

When I still let him play soccer....

When I still let him play soccer….

In the meantime,  he is out on the playground, smashing into another kid and going to get stitches.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized and have No Comments

Artifacts of Love

 

October 1996, bridesmaid hair!

October 1996, bridesmaid hair!

Some days go almost as if there is nothing that is different or “wrong” in our family.  We play games, we carry on conversations, we clean up around the house, we go out to dinner and watch ball games together.  For a few liberating minutes, it feels like not only can we do this, but that it is going to be OK.  These are the days and moments I cherish and need to stay in a somewhat healthy frame of mind.

It doesn’t always start out so blissful.  Jim was trying to clean the bathroom mirror with just water this morning instead of glass cleaner.  There were water drops collecting all over and he couldn’t seem to figure out what was wrong.  I eventually told him he had to use the cleaner. Then he somehow took apart part of the sink and now it won’t drain right.  I have a feeling that I will be calling a plumber in the next day or so.

But, it is OK.  He still cleaned the bathroom and vacuumed.  And he seemed to follow the basketball game we went to and he didn’t look too disoriented. Yes, this is a good day.

One of the things we are trying to do is clean out years worth of paperwork and scatterings of memorabilia that we have collected since before we were married.  Today I took an hour or so to go through two boxes that Jim had brought down from the attic.  In this box were old cards, notes, letters and ticket stubs from our first few years of dating and marriage.  The memories that came flooding back.  The beautiful writing that flowed from Jim’s pen.  The sentimental words that seem even more poignant now.  Telling me in so many different ways how much he loves me, how he wants to grow old with me, how happy he is that we are together.  I start to cry as these memories overwhelm me.  Brad sees me and asks me why I am crying.  I tell him because I am reading old love notes from Daddy and that it makes me so happy that I have to cry.  It is stark contrast to the scrawling  Jim does now.  It makes me recall how talented he always has been with words and how he seems to struggle with writing his thoughts and feelings now.  Seeing all of the love and emotions in his words and knowing they were written BAD (Before Alzheimer’s Diagnosis), before our world started to collapse around us, means so much more.  THIS is MY Jim.  The man I fell in love with.  The man that swept me off my feet.  I still live with him but very rarely get to see that man.  These souvenirs of a happier and carefree time were indeed bittersweet. They helped me recall the man I married and how in love we were and what he was like.  Sometimes it is easy to forget his wit and his romance and our closeness and how absolutely wonderful he was to me.  It seems like a different lifetime, but it was only a few years ago. I will treasure these mementos for the rest of my life and will one day share them with Frances and Brad.  I am so glad I didn’t toss them years ago and still have these artifacts of our love and our early years to preserve a memory that I struggle to retain.

Yes, there are still good days and they are a sweet, sweet vacation from our new normal.

posted by Karen in Uncategorized and have Comments (2)

Pack your bags

Jim loading up the car, August 2010

Jim loading up the car, August 2010

Our daughter, Frances, plays travel softball.  I love the fact that she loves to play sports and I enjoy watching her immensely.

This past weekend she had a tournament over an hour away.  So we had to stay in a hotel.   This brings more packing and planning into the mix.

Frances got all of her stuff together and I looked through her suitcase and her bag with her uniform in it and we were all set.  Until we were at the hotel that night and unpacked the van and couldn’t find her suitcase that held her uniform for the next day, her pajamas, her brush and her change of clothes.

“Frances, where is your bag?”

“I told Dad to put it in the van”

“Where was it?”

“In the hallway”

“Why didn’t YOU put the bag in the van?”

“I can’t carry it down the stairs.”

“Yes you can.  You KNOW he might not remember to do what you ask him to.  You cannot tell him to do something and then forget about it and assume it is done.  This is the second time you have had this happen. When are you going to learn?”

How do you straddle that fine line of making the kids understand Jim isn’t the same Dad they have known and make sure they still respect him? So THEY must step up and take responsibility for more and more.   At the same time I must tread lightly so as not to upset Jim or his psyche and his morale. Or for that matter, I must learn to let this shit go because I know my blood pressure must sky rocket during these moments. Jim is a man that takes a lot of pride in his accomplishments and it seems he has to work harder and harder to keep them coming.  Don’t 8 and 12 year olds need to learn to keep up with their own stuff? Don’t they need to know how to pack their bags AND make sure the bags get into the back of the van? Wait!  Where was I when all of this was taking place?  Isn’t it my fault that her bag wasn’t in the van?  Oh, yes.  I was filling up water bottles, turning down the thermostat, making sure the cats had food and water, packing my own bag, making sure all of our toothbrushes were packed, making sure I had the address of the park where the games would be played, making sure we had coats and hats and damn!  I forgot to empty the trash before we left. That would have been something Jim would have been all over in the not too distant past. Our roles are changing and no one is filling me in as we go along on my new duties.

I know I have to teach the kids responsibility.  I have to give them room to grow and to learn to take care of themselves.  At what point is it too early to do this?  Is it fair to have them grow up so quickly they miss out on the carefree childhood we all strive for?   Does a carefree childhood really exist anywhere other than in our minds and movies? Will they become bitter adults that resent not having a childhood that wasn’t filled with thoughts of death and Alzheimer’s Disease and taking care of Dad?

On the way back from the tournament we stopped to eat at one of our favorite places. This was something to be excited about since there isn’t one located close to us. Everyone is happy, I can relax for a few minutes and take a break from driving. The kids will be content and get along for at least an hour.

We all order. We go wash hands, get napkins and wait at our table for them to bring us our yummy food. The forgotten luggage is a distant memory.

They bring us our food.  But they have a huge bowl of  Chicken Noodle Soup . The waitress gives everyone their entrées and is holding up the soup asking who had the soup? No one.  I look at Jim.  He has no food in front of him and has a look on his face that I am starting to recognize as I have no clue what is going on right at this very moment. I do know that in all the years I have known him, Jim has never ordered Chicken Noodle Soup for a meal.

“Jim, did you order Chicken Noodle Soup?”

“I don’t think so.”

“What did you order?”

“I don’t know.”

I give that waitress a lot of credit.  She did not seem fazed one bit by a perfectly healthy looking man telling her he couldn’t remember what he had ordered 5 minutes before.  She simply asked him what he had ordered.  When he told her he didn’t remember, she asked him what he wanted, went to the kitchen and a few minutes later brought it to him with no problem.

Thank you.  Thank you for being a kind waitress when I was sitting there trying to figure out what to do.  I didn’t want to embarrass Jim and explain he has Alzheimer’s Disease.  I didn’t want to make it a big deal in front of the kids. But inside, I wanted to make it a big deal.  Just like the piece of luggage.  Just like the broken dishes.  Just like the misplaced glasses.  Just like the jar of honey in the refrigerator.  But I don’t snap.  I don’t say anything else.  Whew. I am growing. I have to.  I don’t have a choice and it is better not to fight it.

Each time Jim does something “new” in his decline with the disease, it is like a slap in the face. Sharp, quick and out of no where.

Oh, so you thought you could relax for a few minutes, eh?  You thought life was going along smoothly and that you can handle this, eh?  Ha! Ha! Ha! Ha!  You stupid, stupid fool.  Watch this and try to figure out NOW what you are going to do…..

Yes, I have read the info. out there.  I know it is going to get worse. That one day, I will wish for Jim to be where he is NOW.  But I don’t care about what is coming.  I care about how he is today and how it affects the kids. Sometimes ignorance is bliss and sometimes it doesn’t matter.  Sometimes you can only focus on what is right in front of your face and deal with each part of your life as it comes hurling at you, even if you know that you won’t be quick enough to move out of the way.

 

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comment (1)

Letting it all go

On a dinner cruise through our Alzheimer's Support Group.

Dinner Cruise provided through our Alzheimer’s Support Group, 2012.

It is night and the house is quiet.  Except for me and my normal night time activities.  These include searching the web for something to occupy my mind, songs I have on iTunes, or the news.

I usually end up crying.  Sobbing.  When I listen to songs, they make me emotional and bring out my inner fears and the tears. At this point I don’t play my work out songs, I play the songs that bring out the sadness. Right now the latest by Pink, Rihanna, All things Adele, and a few by Train do the trick. There are many to choose from. Replay.

All pressures from my work day are evaporated.  Pressures from taking care of the house, Jim, the kids and life are there, but released. I let it all go through each tear.

That’s ok.  I let it out. Jim is long asleep.  The kids are asleep and it’s what I need to do. Even though I was soooo tired a few hours ago, I get wide awake and can’t even think of going to sleep.

I have my own time to let it all go, to accept what is happening, to process what is coming and to cry and feel sorry for myself.  This is my time.  I get it one time a day, sometimes.

I will take it and use it to the best of my ability.  All I need is a good song, some privacy and the ability to let it all go.

 

posted by Karen in Uncategorized and have Comment (1)

Team of Two

Screen Shot 2013-03-14 at 10.56.19 PM

DisneyLand May 4, 1996

 

Jim.  My beautiful, handsome Jim.  Where to begin to describe him.

One of the first things I noticed about him was his legs.  He has really nice legs. He was playing racquetball and I was coordinator for the Nellis AFB  Corporate Challenge team in Las Vegas.  Yes.  We met in Las Vegas. He was in the Air Force and I was a GS employee for the Air Force.  I don’t know if “love at first sight” is the correct verbiage, but that is pretty close.  At least for one of us.  I was “in charge” which means I was barking orders to all the players to make sure they were on time and knew which courts to be at and just totally trying to tell these guys (and gals) that knew way more than I what to do.

I had called him weeks before the actual tournament to make sure he was signed up correctly, to make sure he had his shirt, to see if he played any other sports.  Part of my job as the coordinator for these Olympic type games, was to ensure our team had participants at every event.  Bike race, canoeing, track, golf, swimming, basketball and on and on.  There would inevitably be something we didn’t have anyone signed up for.  So, I would get on the phone and start calling athletes who had already registered for other events and try to sweet talk them into doing something they had no desire to do.  Jim did not sign up for anything else.  I would come to find out later he is by far one of the most athletic people on the planet and he did me wrong by not participating in anything else.

I really don’t remember those early phone calls before we met in person.  For some reason though, he felt a connection before we ever met face to face.  Months after we met, he told me after one of my infamous phone calls, he hung up the phone, turned to the guy next to him and said he was going to marry that girl.

The day of  racquetball comes and I am 26 and single in Las Vegas and trying to figure out what I am doing with my life and when am I ever going to find the right guy.

Jim was 34, had never been married and was also single. And very military and everything by the book. I tried not to do anything by the book.

I can still see those legs moving around the racquetball court now.  Sexy.  And then I started noticing he was a pretty good player and he was pretty cute too.

I somehow weaseled my way next to him to watch some mutual friends play a doubles game.  He asked me if I wanted one of his oreo cookies. That was supposed to be my sign that he liked me….he only shared them with people he liked. I declined.  In his mind, that was an “x” against me. But I did tell him I would buy him a Grolsch if he won. He did.  Oh, did I mention he was racquetball champ at every base he was stationed at?  He gave me his medal and told me he would collect it when I bought him his beer.  So I waited for him to call.  For like a day.  (remember? I am just now really learning patience.)  I called him for weeks trying to get him to meet me for the beer. I was just at the point of  shoving that medal somewhere I won’t mention when he invited me to come watch him play softball.  At the time, he was on a couple of travel softball teams and the base softball team.  So, not too excitedly, I agreed to meet him at the fields and watch him play.  There I was, sitting by myself in the stands, listening to the other girlfriends and wives talk.  Feeling their eyes on me as I tried to figure out what I was doing there.

We went for the beer.  He had somehow “forgotten his wallet” so I gave him his medal, bought the beer and fell madly in love over the next 3 hours we sat and talked by ourselves in the crowded bar.  As he was walking to his truck when we were leaving, he casually told me, “I am glad you liked the flowers.” WHAT?! That rascal!  I had received flowers at work just after Corporate Challenge had ended and the card had congratulated me on a great job but wasn’t signed.  I had hoped they were from him, but after he blew me off for a month I had given up hope that they were. I don’t remember the drive home, but I remember the feeling.  Elation and excitement and giddiness.

That next weekend I had a trip to do for work.  I was to take a group of people to DisneyLand.  If I wanted to take a guest I could.  I took a chance and called Jim and asked him if he would like to go. We left at like 5 in the morning and returned around 2 a.m. It would be a long first date and would definitely decide if we were cut out for each other.  If we weren’t, it could be a really long day.

On the way there, we sat across the aisle from each other, not sure what was really happening between us, not quite boyfriend and girlfriend yet.  I was working, playing a movie, letting everyone know our schedule, making sure everyone was happy and at the same time trying to impress him.

By the time we spent the day at Disney together, ending it by watching the parade down Main St. where he gave me a quick first kiss, I think we were both completely smitten.  I moved in with him a little over a month later. We were married 12 months later.  That was almost 16 years ago.

It hasn’t been easy.

There have been times we have wanted to kill each other.  We have moved into separate bedrooms.  We have yelled and said things we shouldn’t have. We have thought of divorce. We fought.  We fought to stay together.  We went to counseling.  We wrote letters.  We had long talks.  We worked it out.  We are a team.  And I am so glad we are.

Our first year of marriage, some of our biggest arguments were over my piles of stuff around the house.  Magazines, books, papers from work, whatever I had laying around.  Jim couldn’t stand clutter.  He was organized and neat and it drove him crazy. I mean, when the saying “opposites attract” is said, there could be a picture of us with it.  Over the course of the last couple of years, these roles seem to be changing.  It is Jim that can’t seem to figure out what to keep and what to throw away and it is me that is being driven crazy by stuff being all over the house and not where it should be. I am trying to figure out a system, but I haven’t yet.  It will come, I am sure.

We both knew when we met that we were it for each other. I can not even begin to describe what Jim has put up with and dealt with from me. I have done the same. That is a marriage. Thank you for giving me Jim. Thank you for giving me to Jim. He has given me unconditional love that I have only seen from my parents and my children. WE are a team.  WE are good.  I am loved. I am LOVED by a man that shows me everyday how to become a better person.

For the record: I was never a Vegas dancer.  Jim has been known to jokingly tell people that I was but then he forgets to tell them it is a joke….of course if any of them had ever seen me dance they would know better. Imagine my surprise the first time a friend of ours asked me about my dancing days in Vegas….

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have No Comments

Doctor Day

Jim getting tests done at the NIH in 2011

Jim getting tests done at the NIH in 2011

Today is Doctor Day.  I really don’t look forward to Doctor Days.  I used to. But now, they are the progression the disease is taking on Jim Days.  Just emotionally draining and depressing as Hell days.

I used to look forward to them. We would go with high hopes that the doctor would tell us (finally) that nothing was wrong.  That it was some type of abnormality with something and he will be fine.  Just take this medicine and you will be cured.

But each appointment would come back with negative results.  Negative for a tumor.  Negative for a stroke.  Negative bloodwork.  All the things you normally would pray would be negative.  When you start realizing that Alzheimer’s Disease is something that doesn’t have a negative or positive test result, you start hoping that maybe it is a tumor.  One that can be operated on and then he will be fine.  Or maybe just a minor stroke that a little medicine and time can overcome. Something that has an ends and a means.  Something you can come up with a definitive plan for attacking and beating.

When you go through YEARS of testing and watch the patient, someone you love and cherish slowly decline, with no real definitive answer of exactly what is wrong,  you secretly start hoping for SOMETHING that has a cure to be the problem. It is a very slippery slope.  How can you possibly love someone and wish that what is wrong with them is something that can kill someone else?  You don’t really.  What you want is for them to go back to being the same person they were before you ever noticed something was amiss.  But when that isn’t happening, you start searching for something to grab onto and whatever has a cure will do.

So, each time Jim would have a scan or bloodwork, or mri or psychological testing, we would wait for the results.  The waiting is always the hardest.

Alzheimer’s Disease does not have a blood test or a scan available at your local doctors office.  (*they are working on this) It usually takes years to come up with a diagnosis, especially when they are young, but even then, it is not concrete.  The doctor tells you that they have ruled everything else out and since all other indications show he is completely healthy, and due to his family history, this is what they think it might be.  Early Onset Alzheimer’s.

At this point, you sorta knew this diagnosis was coming.  I can honestly say, I knew long before the doctor ever told me.  I just suppressed the knowledge deep into my mind and hoped for something else.

Then the really depressing part comes along.

Because, you don’t really know anything about Alzheimer’s Disease you decide to do some investigating.  It is usually for old people and they don’t have a cure or do they? Let’s Google it and do some research for ourselves. 

Silence.  As you scroll through website after website you see things like: No Cure. Irreversible. Inoperable. Progressive. Slow Memory Loss. Eventual lack of ability to take care of themselves.

And you sit there just wondering what does this mean?  How long do we have?  How old will the kids be?  How long will he be able to keep working?  How long will he be able to live at home?  Wait, does this mean I am going to be a widow? What if something happens to me first?  Who will take care of him?  What will happen to the kids?  How can we financially survive?  What does this mean for us, for our kids, for our family?

But, you can’t ask anyone.  You have to keep it to yourself.  You can’t tell your kids.  You can’t tell co-workers.  You can’t tell neighbors and acquaintances.  You can’t tell the kids’ teachers. You sit silently and cry and ponder the future. With no one to turn to and unable to reach out to the one person you always reached out to in the past; the person that is afflicted with this gradual ailment, you start to reel into an inward spiral.

Yes, I used to look forward to and count down the days until Jim’s next doctor’s appointment.

Now, I count them down with trepidation.

Every six months we go in and the doctor asks how Jim is, with Jim sitting next to me.  I let him answer and I have to make a decision.  Tell the doctor that I am seeing noticeable changes, that he is starting to forget more and that he doesn’t seem to notice? Or keep quiet in order to protect Jim.

Then the doctor does a series of tests.  Remember these 5 words, draw a clock and put 12:45 on it, touch your nose, follow the pen.  Ok, can you remember those 5 words?  How about if I give you a hint.  It is a color.  It is a type of fabric.  It is a building.

So, I sit next to him listening.  Listening to the man that was so smart and so strong and so knowledgeable do worse and worse every 6 months on the same test.  And I must not cry.  And I must stay strong.  And I must not let on that he got something wrong.  This gorgeous man, who used to get them ALL right, now can remember 2 out of the 5, cannot remember what day it is and is somehow still able to count backwards from 100 by 7’s.  Well, we will see in a few hours about that last one.

It would be like taking a test and getting a 100.  Then taking the test and getting a 95.  Then a 90.  Then an 85.

No, I am not looking forward to the doctor visit.  It is a punch in the gut that I have to take without any reaction.

So, we get ready to sit in the waiting room.  Surrounded by people with their own stories.  Smiling at the receptionist, smiling in greeting at the doctor and cringing on the inside the whole time.

I have decided to take off work.  The whole day.  I don’t really have the vacation time, I will need it later in the year.  But I really can’t focus and get myself together after these appointments.  I will be worthless. And I know Jim and I will ride for 45 minutes home after the appointment in silence.  Each of us thinking of our own worlds, not knowing what to say.  I will need time to decompress and take in our world that we are part of at this moment.

Then, the kids will come home from school, I will need to fix dinner and take Frances to softball and help Brad with homework.  The doctor’s visit becomes a distant memory, for one of us anyway.

posted by Karen in Uncategorized and have Comments (2)

My New Life

 

Screen Shot 2013-02-28 at 8.06.47 PM

Jim at Family Camp in Aug. 2011

 

The following piece was originally written in 2011.  Jim was still working full time and I was still in shock. I am releasing it as I wrote it then and have not  updated the information.  Jim is no longer on Aricept. He is no longer working. I am no longer seeing a therapist on a regular basis, but know that I should. 

I am a little more removed from the anger stage and have come back around to wanting to help others and do more for families in the same or worse situation.  I am on a mission to educate and eradicate. That isn’t to say I am completely out of the anger stage, but I am working on it.

 

I am starting this blog based on a recommendation from my therapist but against my better judgement.  I am of the mindset that too many blogs, you tube videos, public/ private phone conversations and desires to be on the cover of a magazine or on a reality show are ruining our society.  But, I have a strong desire to help others in my situation and in some small way make a difference in the lives of others.  OK, that last one was just bullshit.  The old me would have wanted to help others.  I have always done that in lots of different ways.  I still do.  I just collected socks (114 pairs) in my son’s first grade class to send to Japan.  I collect plastic bags from his school to take to be recycled (over 50,000 bags in two years) . I helped a turtle cross the road this morning while on a walk. I used to be a staple at my local Hallmark store, dropping a minimum $100 a month to remind friends old and new how special they were/are/could be to me…but now it is me that is indulging in my own narcissistic blog.  Lord help us all.  I guess it is either this or blow my brains out.  Or live in a drunken stupor.  I’m not sure I would mind that last one, but the first one isn’t an option since I have two young kids,  7 and 10.  They are awesome.  But I have to say that because they came out of me and are part of me, right?  Don’t you hate when people brag constantly about their kids?  But, really, I think mine are pretty damn cool.

Where is my husband you might wonder?  He is here.  Sort of.  Well, on most days, he is here in body but I’m still wondering about the mind.  Right now he is out of town for work, but that really doesn’t matter.  It’s the same either way.  Actually, I am more relaxed and happier when he isn’t here which makes my stomach churn just writing and actually admitting.  How awful for me to put out there for the world to see and believe and read.  But it is true and I so wish it weren’t.

My husband of 14 years, a man that spent 23 years in the US Air Force, who got promoted above board (early), a man that would have the yard and house in order each Saturday before I ever even thought of crawling out of bed, the man that I was going to grow old with and love forever has Alzheimer’s Disease.  He is 49.  I am 41. I am unable to function any length of time without thinking about this, without worrying about my children, without fretting about finances and studies and drugs and supplements and thinking I just want to crawl into a hole and make it all go away.  For some reason, the hole doesn’t appear and I keep digging along trying to come up with a plan to stop the train wreck that is unfolding in my life. Consume.  That would be a good word to throw out there.  I am consumed with this but I am unable to discuss it with my husband, my children, my bosses, my neighbors and most of my friends.  There are a few friends that know, but I certainly can’t go into much detail on a daily basis or else they would quickly become my former friends.  My parents are retired and care and hate what I am and will be going through, but they have their own lives…cruises to go on, golf trips with friends to partake in, Red Sox games to watch and other grandkids to love and cherish and visit.  Besides, my husband isn’t too far gone yet so I don’t really need their help too much, YET.  I know it is coming and I’m sure they do too.  When I think too much about it I cry.  When I don’t cry I get really angry.  When I don’t get angry or cry, I get bitchy to my kids, my husband and my friends.  The shitty part is I don’t have any idea how long this will go on.  My husband is on aricept, a medicine for Alzheimer’s Disease.  It’s not helping.  At all.

I asked him yesterday what he wanted to do for Father’s Day.  He asked when it was.  I told him I thought it was June 18th or something like that.  He said, “no, what day of the week is it.”  Really.  Remember, USAF Senior Master Sargent…smart guy…doesn’t know Father’s Day is on a Sunday?  Lord, give me a cold beer and the strength to drink it quickly.  The bright spot in this conversation…there was a time (last month and beyond) that I would have gone off on him.  “What?  You don’t know that Father’s Day is on a Sunday?  Really?  Give me a @#$%^ break.  How can you not know this?  Mother’s Day, Easter, Father’s Day are always on a !@#$%  Sunday!  Thanksgiving is on a Thursday.”  And this tirade, I am not proud to say would have gone on for quite a few minutes.  Flash forward to yesterday.  I am a changed woman : “Sunday.  It is on a Sunday” and that was all I said.  Then we got off the phone and I cried into my beer and once again tried to determine how I was going to support my family financially, emotionally and physically in the years to come.

posted by Karen in Early Signs of Alzheimer's,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

A Box of SunShine

 

burdens saying

 

Wow!  What an overwhelming response I have had since starting this blog.

I have to tell you, I was nervous.  Really nervous.  It took me a while to decide I was really going to do this. Then it took a long time to come up with a name. And it took a long time to figure out if this is the best course of action to help my husband, my children and everyone else that will face this disease head on.

The stories that have been shared with me and the love and support I have felt since opening my soul to you gives me hope.  It gives me hope that I will survive.  My kids will survive.  We will all be OK.

Thank you.  Thank you a million times from my heart for reading, for sharing and for taking the time (which few of us seem to have much of) to reach out to me and share your story, your love and your heartfelt ideas for this blog.

Our story can be a real downer.  But, I don’t always feel down.  I sometimes feel like I’m on top of the world. I listen to a great song in the car and feel the sunshine on me and love life.  I love my kids, my parents, my friends, my husband and all is right with the world. I sing or become engrossed in a good book.  I have lunch with friends or go for a jog or a walk with a friend.  Through my work, I meet and help a lot of people.  Life is good. Just like all the bumper stickers and t-shirts say. Life is good.

I would not be able to say that without acknowledging that the only reason I could do this blog and say “Life is Good” is because of friends.  Some are recent friends.  Some are friends that have been around a while.  Some are people I call Mom and Dad.  Some have come out of the woodwork to help me set up the blog, to help me come up with a name, to sit and listen to this crazy idea and tell me “You should.  You should do this. The world is waiting.”

We all need friends like that.  Sometimes, you want to be that friend and life gets in the way.  That is ok.  I have someone that helps me see things a little clearer sometimes.  I was talking to her about how I was feeling lonely and like no one cared, and on and on about poor, poor me. Sometimes it is very easy for me to fall into this spiral.

She put it all in very clear view for me.  She explained that my friends do want to help.  But sometimes, they just don’t know how.  Sometimes, you see a situation and it is too much for you to comprehend, to take on.  Sometimes, people have their own shit they are dealing with and they just can’t deal with anyone elses’.  And that is good.  Because, life ebbs and flows.  Sometimes you are the giver and sometimes you are the receiver. Sometimes, you just can’t give and do for someone as you would like to, but you care and you want to help as much as you can. When this happens, sending positive thoughts and  wishes helps too.  I am starting to get this.  I have been the giver many times. Recently I have become more of the receiver.

It is hard to be the receiver.

Several months ago I posted something on Facebook about having ants in the kitchen.  I was asking my friends what they used to get rid of the tiny pests.  I got several responses and I also got a really special response.  I got a bag of ant killer hand delivered to me at home by a neighbor.  Someone I wasn’t even particularly close to.  Someone who could help and did.  It was a simple gesture that made a huge impact.  Who does that?  At some point and time, we all do.  Sometimes more than others.

Last year I  had a really bad day.  Ok, last year I had ALOT of bad days. One of those days that I just couldn’t stop myself from crying.  It was all overwhelming me and I just didn’t know which way was up. I had taken Frances to softball practice and I was sitting in the car.  Sobbing.  Just letting it out.  No one could hear and I was alone and I just needed to get it out. Thank goodness we had tissues in the car….

All of a sudden, I see one of the Dads from the team knocking on my window. Oh shit!  I cracked my window; red, swollen eyes, runny nose and all. He asked if I was OK and asked if he could help.  Frances had fallen and scraped her knee up pretty good and he had come over to let me know. Once he saw me, I think he forgot about her and just wanted to help. This man is someone I have gotten to know over the past couple of years and believe me, he is not a softy. At all.  There is not a lot of emotion or sentiments that are passed from his lips. He tells you what he thinks and how he thinks it should be. I like that about him.  Straight from the hip.  I was touched to the core that he offered help and I knew he meant it. I was also completely embarrassed.  Nothing was ever said between us about that moment, but about 2 or 3 months later we all went out to dinner.  His family and ours.  We ate and had a great visit.  When the bill came, he paid.

My pride was hurt but my heart was warmed.

I have friends that help take the kids to practice when I have to work and they both have two different places to be.

I have parents that listen and listen and listen without ever telling me to suck it up and stop complaining. Thank you. I don’t know where I would be without my Mom and Dad.

It amazes me the power that a small act of kindness has to make such a huge difference in the outcome of a day.

There have been days I have woken up and just not been able to think clearly let alone desire even getting out of bed to face another day. So many times during one of these awful, gut wrenching times, a friend or a co-worker or just an acquaintance will somehow manage to help shift the axis of my world enough to lift me out of my funk. Usually without even knowing the wonderfulness of what they have done.

Thank you to all that have helped and will help in the coming years.  Thank you for those that help others in the same or similar situation.  Sometimes you can do and sometimes you can’t. When you can; do.  It will warm you on the inside like nothing else will.  It may be inconvenient.  It may cost you.  But the reward will far out weigh the cost and I promise you, the person or the family that you are helping will appreciate it more than they will be able to express to you.  It will give them hope where before they had none. And that my friends is how you make a difference and change the world. It will let them know they are not alone.  And it will happen when they really need it.  Just at the moment when they are thinking, “I can’t do this.  No one cares and I can’t do this.”  You will come along and you will make a difference that no one else could have.

My request to you:  Help when and if you can.  It can be something as simple and small as a handwritten note or card.  A cut flower left on a porch.  A call or text or e-mail. Recently, I received a “box of sunshine” from a person who has a daughter fighting cancer.  I don’t know the family terribly well, but I suppose they heard about Jim and wanted to do something.  And they did. They got Lemonhead candy, butterscotch candy, a pedicure kit that was yellow, a solar dancing sunflower and other yellow items and put them in a box with a simple card letting me know they thought I needed a box of sunshine. Wow.  Are you kidding me?  Their daughter is fighting for her life and they are thinking of us and putting all that stuff together in a box for me?

Takes your breathe away, doesn’t it?

Have patience. For a very long time I wasn’t able to share what was going on with Jim.  It was this secret that enveloped my whole being.  I started acting short with friends and forgetting things.  I am sure I just wasn’t “me”. People, remember we all have stories.  We all have shit we are dealing with.  Someone may have up a beautiful life facade that at any moment can come crumbling down around them.  I know for me, I always felt like I had a train wreck up ahead and I had to figure out a way to stop it or slow it down. That sense of urgency has subsided a bit, but I know there are friends and neighbors out there that are feeling the weight of the world on their shoulders.

It takes us all to lift up the other.  The one thing I have had to change is my personality. Patience.  Never my strongest virtue. I’m still working on it.  With the patience of others, I will be able to grow like I never thought possible. Show your goodness. The world needs it.

Congratulations.  You are making the world  a better place. Thank you. All it takes is a bag of ant killer, a dinner dropped off, an offer to take the kids, a lunch date, or just an ear that will listen. Do it while and when you can.  You never know, you may get more back than you give.

 

 

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)