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"