Thanks ElLois for the update on your mom...I'm so glad that you finally have a name for what your mom has...I know it's been so frustrating for you and for her...sometimes it's harder for the one who's caring for the one with the illness...You have been such a rock ElLois...and I am so proud of you..I know it's been hard, but you have stuck with it and have not let others get you down. I will be praying...for you and for your mom...
I will see you on Tuesday morning...if I can get up on time, I'll be there by 9 or so...if not..by 10 for sure!!!
Love you girlfriend..
Cheryl Annie

I love you girlfriend.  It was ONLY God who brought you into my life.

letters to mom's "people"

Over the year, a slow, creeping "worm" was eating its way through mom's mind and body.  The symptoms have finally all been put together by the neurologist. We (mom and I) were wondering if she had Parkinson's; her cognition, thought processes and the frequent falls have been an ache that the pain in mom's body find unbearable, totally unbearable.   Several weeks go the hallucinations started, voices and delusions seemed to take over mom and only by God's grace and in the form of a blessing did we make it through. This is what I wrote to my siblings and several of mom's dear friends:

 

To make it short and sweet...... after seeing Dr Schneider (neurologist) today...

Mom does NOT have mild vascular dementia... she has Lewy Body Dementia.  http://www.mayoclinic.com/health/lewy-body-dementia/DS00795

Lewy body dementia shares characteristics with both Alzheimer's disease and Parkinson's disease. Like Alzheimer's, it causes confusion. Like Parkinson's, it can result in rigid muscles, slowed movement and tremors.

But the most striking symptom of Lewy body dementia may be its visual hallucinations, which can be one of the first signs of the disorder. Hallucinations may range from abstract shapes or colors to conversations with deceased loved ones.

Mom is right there.  This explains our assumptions of parkinsons, and this last week the hallucination delusions and confusion.

She is now on her starter pack of Aricept.

Then we went to the pain clinic.....

I will hold the Plavix for 7 days and then she will have epidural steriodal injections into her lower back. Hopefully 2 injections during June.  The CT Scan of her back showed a compresion fracture of L5.  If it gets to it, there is another procedure they can do to relieve the pain but that is way down the road and actually..... may never occur.

 

We sat in the car driving the other day and she asked, out of the blue, why doesnt God take me home?

 

 Our blessing??  Angel, mom's friend who use to live upstairs, came to visit on Sat and we had a long talk, a good one, she prayed with me as well as mom.  Her visit turned into 7 hours so I could get some sleep.

When I told Angel the newest news, she wrote back:

Well...my heart is both relieved and sickened at this diagnosis...first relieved because the strange conglomeration of symptoms have a name. After spending time with your mom, it was clear that she did NOT have MILD anything and that something was seriously wrong! In fact, Lewy Body actually popped into my head...but I thought 'well they would have diagnosed it if that is what it is'. ALso, in my experience with this dementia, it has a rapidly progressing course so she will probably get to Jesus sooner and not have to linger for years with dementia.

 

Sickened because this is a wicked form of dementia that I don't believe is deserving of your mom...or you. But one thing I do know is that God IS faithful and He loves you both  passionately. I will do my absolute best to be as physically supportive as I can but will be often lifting you both up in prayer.

 

Specifically mom needs God's intervention 1) easing the edge of the pain in her back and knees 2) the degenerating cognition, thought processing and hallucinations is halted (it will never improve at this point) by Aricept 3) God gives mom the desire of her heart, to go home.

 

To close I want to borrow the words of Matt Maher in "Hold Us Together" and slightly change them:

 

"God's love will hold us together
Make us a shelter to weather the storm
And I'll be my mother's keeper
So the whole world would know that we're not alone"

leaning in the loving arms

Sheri was helpful...she congratulated me on my dependence on my Shepherd,

I just cannot get to caught up in frustration and let mom's illness irritate me.

I told her it was like taking care of a 3 yr old.

We talked about the cruise....Chrissy is asking not to work like if she were getting paid my Advantage.  This is a working vacation for her or she doesnt go, cause of the money I have spent on her to go.
Then Elizabeth would go, mom 2, and that would be good for me.

Just help me Shepherd say the right words and expidate the rest of the passports.

Written a few days ago..............

Hello brothers and sisters,

 

Who would like to hear the lastest news, diagnoses, etc

in regards to your mothers?

 

your seeeeeester.

 

 Steve asked first 

I would. :)
 then Becky
I would like to be informed of mom's news and diagnosis. Thqnk you.
 then Don

We would,  we would!

 Big Brother

I am sure when Grace is ready she will ask

 

 

The last week has been pure hell and I have documented everything in the calender book I have.

To make it short and sweet...... after seeing Dr Schneider (neurologist) today...

Mom does NOT have mild vascular dementia... she has Lewy Body Dementia.  http://www.mayoclinic.com/health/lewy-body-dementia/DS00795

 

Lewy body dementia shares characteristics with both Alzheimer's disease and Parkinson's disease. Like Alzheimer's, it causes confusion. Like Parkinson's, it can result in rigid muscles, slowed movement and tremors.
But the most striking symptom of Lewy body dementia may be its visual hallucinations, which can be one of the first signs of the disorder. Hallucinations may range from abstract shapes or colors to conversations with deceased loved ones.

Mom is right there.  This explains our assumptions of parkinsons, and this last week the hallucination delusions and confusion.

She is now on her starter pack of Aricept.

 

I will hold the Plavix for 7 days and then she will have epidural steriodal injections into her lower back.  (we went to the pain clinci today)  Hopefully 2 injections during June.  The CT Scan of her back showed a compresion fracture of L5.  If it gets to it, there is another procedure they cando to relieve the pain but that is way down the road and actually..... may never occur.

 

We sat in the car driving today and she asked, out of the blue, why doesnt God take me home?

 

Between mom and Becky, this has been a tough week and God will never give me more than I can bear.  Angel, mom's friend who used to live upstairs, came to visit on Sat and we had a long talk, a good one, she prayed with me as well as mom.  Her visit turned into 7 hours so I could get some sleep.

 

  No one has responded.  I hope Becky gets this disease since we are all now at risk for it.

 

encouragement

oh, my sister...as I read, I thought of Mark Schultz's song I Have Been There because I have. My mom did not live with me but should have had 24 hr care that she adamately refused and I was on pins and needles never knowing WHAT I would find when I arrived.I had to place her in the Lord's hands daily sometimes and like you, pray for more grace. God WILL give you the strength for this journey and I will pray for a fresh breath of His Spirit to flow over you and a great spirit of discernment and provision for you AND your mom.

See you Saturday!

AnGeL

Continued prayers flow your way, and we do trust God, for His perfect timing and all that He has in our days, for
today, tomorrow and eternity.
I can only imagine the stresses and give thanks for Angel too.  What a blessing to have that input and insight.
And as to families, well, some get it and some don't, right?
We pray and love them anyway.
Keep me posted and I will keep on praying, as yes, The Holy Spirit does keep us connected.
Mary

 Ellois, I know the feeling of being a caregiver, been there and done that.  So many people would say to me." " The Lord will onlygive you what you can take"  I thought if I heard that one more time, I would  scream.   Each morning I would think ,"What will today bring, how many falls will there be etc."  To this day I will not say that phrase to anyone.  The Lord does give us strength and somehow we get through the day but hearing it all the time seemed lile irony  at times so I just can`t say it     But this "ANGEL" came at the right time for you and hopefully you can get some answers from your dr.      Hope this week will be better for you both.      LOve and blessings, Margaret

               Keep me posted


Yes, El Lois, I am and will be praying and counting on His Love and Care for you as you go thro' these days.
Oh my, so much and more and more Carl's way of going to Glory is seen as a blessing for him and for us.
Yet, we miss them so, don't we?
Praying for your Mom and you  and your help and family too,
Carl's Mary

Before I went into mom's I heard:

Sometimes you need to do it afraid.

God is not gonna make me do something He has not prepared me for.

Bring me to my knees Lord
I lay me down
Rid me of myself I belong to You
Lead me, lead me to the cross

GOD  I canot do this myself of my own grace and strength....I am sobbing for your help and I need it.
as I go in there take over me and do it for me...i give up i just cannot do it anymore




845pm................. You are a merciful kind Shepherd