I'm just gonna say it....

It's my mom...

She still doesn't want anyone to know that knows her because she said it will make them look at her differently... and I'm not trying to be disrespectful to her.   I'm pretty confident that no one that knows her is reading this blog....so I'm just saying it because I need to say it for me...

It's my mom.... 

The woman that comes over to take care of me if I'm sick...

The woman that has shown up for every one of my surgeries even though I'm a grown adult and most of the surgeries are minor...

The woman that spent 8 weeks living with me in Japan just so she could catch the birth of her first grandchild all those years ago...

The woman that took care of 4 little kids after her husband left her and us....



I'm sad for her... I'm sad for me...  I'm sad for her grandchildren...  Each day that I spend with her, I feel the diagnosis is accurate.  God help us.

Deluding myself

So when I called to find out the status of the follow up appointment, I heard upbeat comments like "the GP is going to give me medicine that will slow the process down and most likely will stop it where I am now... I won't get any worse."

So I posted that to other family members thinking "Okay, this is what the doctor said so maybe there has been progress on the disease."  I even stated in my post "She's putting her on medicine that will significantly slow progression down if not stop it all together."

Can I be so hopeful?  If I am hopeful, am I in denial?   And if I'm not hopeful, am I damning her to this awful disease?  Everything I'm reading on the Alzheimer's Association website doesn't look hopeful:

"Currently, there is no cure for Alzheimer's. But drug and non-drug treatments may help with both cognitive and behavioral symptoms."

"Although current medications cannot cure Alzheimer’s or stop it from progressing, they may help lessen symptoms, such as memory loss and confusion, for a limited time. "

I don't want to believe!!!!

"Dear Lord, please take this away.  Please heal her and make her whole.  Please don't take her away from me like this...  In Jesus' name, Amen."

Arming myself with information

My sister-in-law forwarded me this blog and I cannot seem to get enough of it.  I started at the most current post and have worked my way backwards.  I read it when I'm stopped at red lights, or when I'm waiting in line at a drive-thru, or when I go to bed at night.  I don't know the author's name yet, but I know her husband is Bo and he's the one that is suffering with Alzheimer's. 

• He forgets words, like what "water" is...
• He makes up words that she doesn't even know what they mean...
• He repeats himself over and over all day long....
• They've been married 51 years yet she's so lonely...

What has caused this and how can we stop it?  I don't want my loved one to go through this.  I don't want anyone to have to go through this... Why are their memories being robbed?

From everything I'm reading, it is going to take a lot of patience and love to get through this.  I do not believe one person can handle the bulk.  It is a labor of love that must be shared amongst family members.  

Diagnosis Confirmed

They went to the GP appointment today and the doctor said that she had read the assessment and believed the diagnosis to be true.  We can do an MRI, but it is not needed for confirmation of the diagnosis.  Medicine will be prescribed and I'm told it will significantly slow down the process.

When my sister called them tonight and ask how the appointment went, they said "What appointment?"

Follow Up Appointment Today

I was "encouraged" to go home before the appointment.  "Spend time with your husband."  "You need to work."  "I am okay, so go take care of your family."  

I'm fighting with my respect for them and their wishes and my need to take control and move into action.  It is hard when you've been taught to obey and respect your elders to know when to gently say "I have to help now so I'm going to not respect your wishes on this..."    While I really wanted to be home, I didn't want to leave.  I wanted to go to their appointment.  But I got the distinct feeling that they do not want me back there yet.  They are still independent and "healthy".   That are still hoping for a misdiagnosis.  They are still thinking that the test is wrong and that there was no way from the way they were tested that it was an accurate test.

And I can say that my last two days there, there seemed to be much less confusion.  They had calmed down and seemed to be able to think a little clearer.  Although there were some episodes.  Sometimes words wouldn't come easily.  There was a struggle to find the right one and I would have to help.

Another example, he/she kept saying "I have to check the calendar for my appointment time" even though we had checked at least three times already. 

Once, when we went to see a movie together, I went to save the seats and he/she went to get the popcorn.  I asked for water, and within seconds of making that request, they forgot what I had asked and got me a diet coke.  I'm no longer drinking diet coke and they know this, but it still did not register.  So there are some signs.

Today is the follow up appointment with the GP.  We are pretty sure that there will be more tests ordered.  I'm hoping that medicine will be prescribed while we waiting for confirmation.  Better safe than sorry.  I've made them promise to tell me the truth from what the GP says.  I think they will honor that.

In the meantime, I continue to pray and am still having trouble finding joy each day.  

I'm here...

After being told not to come, I was then told to come. Signs of putting others needs before their own?   Or signs of being scared?  Or signs of the confusion that is sure to come? 

I've been here since New Year's Day.  People are afraid to be alone in their thoughts.  When we are alone, we may get sad.  Sad has a stigma as being bad.  But it shouldn't be bad, right?  Why is that emotion any less important than our other emotions?   I lost a cat recently and I had not cried.  Until one day when I was alone.  It just hit me and then I mourned her.  I think this diagnosis will just "hit me". 

They don't want to believe it.  There is denial in our midst.  But for the one suffering, I think there is a dawning.  A recognition. 

Please Lord, don't let this be so...   

Ignorance is bliss....

I've been reading quite a bit, as you can imagine.  We have not had an MRI yet to confirm the diagnosis, but I want to be prepared in the event that it confirms what the psychologist has diagnosed. 

Two blogs that I have found helpful are both from actual Alzheimer's patients.  I wanted to share them with you.

http://davidhilfiker.blogspot.com/2013/01/now-it-begins.html

http://creatingmemories.blogspot.com/

It seems that Kris has had it over 10 years and she's still blogging.  Dare I hope?

Time to take control?

I was flying today to go with them to their doctor on January 3rd.  It is the first appointment since the diagnosis.  But they didn't want me to come.  Oh, they love me...  I don't doubt that.  But they need some processing time.  Since their diagnosis, they haven't been alone in their thoughts.  I'm not sure if I should "afford" them that time.  Do I discourage down time so they won't get "down"?  Do I say "I don't care if you want your own time, I'm coming anyway."   Do I take the reins? 

When I pressed, I was told the appointment is not until the 4th or 5th.  Those two days are a Sat/Sun.  I'm sure their doctor doesn't work on a weekend for routine appointments.  So, the signs confirming this diagnosis continue....

The diagnosis...

Alzheimer's....  It has invaded my family (to keep their privacy, I will not identify whom at this time...)  It is one word with an incredible amount of fear tightly entwined throughout it's peaks and valleys.  As of December 30, 2013, two days ago, it has consumed my thoughts.  I have found no joy.  I have shed many tears.  I do not know who to turn to to express my fears.  I cannot seem to utter the words "Happy New Year" when all of social media is celebrating.  Everyone is anticipating a great 2014.  I'm not.  I'm scared.   If I tell someone, does it bring the mood of their joy down?  Their goodwill? 

This is how I felt when my Nana and mother-in-law died.  People would ask "How are you?"  And automatically, with a smile on my face,  I would say "I'm fine, how are you?"  And then I wanted to scream "I'm NOT FINE!"  But society has said that we must have manners and decorum.  We cannot make anyone feel bad inside.  We have to push down our feelings and not recognize them.  We are not afforded time to mourn.  Gotta be a "team player".

So...  I sit in quiet.  Not wanting to be a "Debby Downer".   Not wanting to believe the diagnosis.   No one believes it...  "Get a second opinion."  "See a specialist".  "Get an MRI first."  "Psychologist doesn't know what he's talking about."   But for me, it's been an explanation.  Now, I see it.  It makes sense.  I've been researching and it is all adding up.

I've been praying too.  Very hard.  But I know that God allows sickness in this world because of sin.  Ephesians 1:11 "also we have obtained an inheritance, having been predestined according to His purpose who works all things after the counsel of His will".  One of the effects of sin is sickness.    Am I a bad Christian because I am feeling sadness and confusion?  Should I be saying "God heals and I'm believing in a miracle?"  If I was a good Christian, shouldn't I be saying "Whatever is God's will?"  How do I accept this?  How can I change this?  How do I make this go away?  How does my life and the lives of my family members go back to normal?  How can normal change in the blink of a diagnosis....