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)

2 Responses to “Doctor Day”

  1. Jaime Harrell says:

    In so many ways, it is hard enough to deal with the difficulties in our lives as they happen to us. People tend to cope and move on eventually after these experiences. But to be continually taken back into this transitional period over and over while trying to make it through a single day might seem to be more than anyone can handle. No matter what anyone says to you or what you say to yourself sometimes, making it through that single day can take an enormous amount of courage, self-respect, determination, and strength- even if that day just consists of waking up and doing laundry.

  2. John King says:

    Thanks for expressing your thoughts and emotions. Those of us on the journey with you know how difficult life can be. By expressing your views you are helping to educate all those that think Alzheimer’s disease is just about forgotten memories. Keep strong.

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