Lessons of LBD Mom's Journey Has Taught Me #1

When we leave this body we have a hope there is a legacy; something others take with them that allows you to live on in one way or another - something meaningful that lasts.  The journey with Mom was, at times, quite difficult, but it was a journey with mileposts, poignant moments, and lessons that will last.  What are those lessons?  Let’s start from the beginning:

1.Doctors Don’t Understand.

As Mom began to enter the disease, long before her diagnosis, we assumed she was simply growing older and more feeble minded.  Her confusion, exhaustion, lack of connectedness, and vagueries gave us something to mull, rather than to begin an investigation into what was really going on.

There seems to be a lackluster effort by the medical community to acknowledge anything might be amiss with the elderly.  They approach it rather coldly and without much passion.   Yes, there’s a story to go along with this:

It was summer of 2012 when Mom phoned me before I drove up to Port Angeles to visit.  She was concerned, as she had toddled off for one of her walks, and less than a block later she began to experience dizziness to the point of nearly fainting.  She returned home and sat down until it passed.  She didn’t seem to believe it was something she needed to phone her doctor to relay, but she was worried, nonetheless. 

     When I arrived I phoned the doctor’s office and was connected to Nurse Ratchet’s mentor.  I explained what had occurred the day before with Mom and told her we wanted to make an appointment for that day to see the doctor.  Nurse Igor asked, “Is she still having troubles?” I told her she wasn’t now, but there may be an underlying complication that causing it, and we wanted to have it checked out.  “But if she’s not having any issues now, why would she want to see the doctor?”  I explained myself again, using simpler terms - hoping that, perhaps, she wasn’t really understanding.  “I still don’t understand why she would want to see the doctor if she’s no longer experiencing problems?”  I tried again, expressing that I was concerned that if there was something wrong with Mom, I would rather find out earlier rather than later; I wasn’t going to be lax enough to allow her to reprise the event on my watch.  “I guess I’m just not understanding how the doctor would be able to help you.  Why don’t you call back the next time it happens.” 

“Fine,” I said, “I will simply take her to the ER and have them check her out.”

“Why would you take her there?  You’re not making any sense?  I said we would see her when she has another event.”

“Are you really this ignorant? I want to be sure my mother is okay, and there’s not going to be another event.”

“And why would you take her to the ER?  We won’t authorize it.”

“Listen here, you stupid b+++h!  I’m taking her there.  If you had one ounce of intelligence you’d understand where I’m coming from!”  I hung up.

A few minutes later, we were heading out the door to the ER when the phone rang.  It was Mom’s doctor. 

“I understand you had an issue with one of my staff?”

“Perhaps.  I may have lost my cool.”

“What’s the issue?” asked Dr. W.

I explained the phone call.  She didn’t get it.  I just hung up and told Mom I needed some air to calm down. 

We drove to  the ER. 

They gave Mom some tests, including a scan.  The intern smiled at me when I asked if they found anything of note.

“Nope.  Just the typical degeneration of the brain that goes with most forms of senility - she is at that age, you know.”

“So, you did find something?  Could what you say is ‘degeneration’ have caused her dizzy spell?”

“I don’t know.  All I know is she’s fine.”

We left, but Mom felt better, but there was still some underlying tension.

The next day she had completely forgotten all of it.

From what I understand now, this was the beginning of the noticeable symptoms.    However, looking back at it now, it was odd that Mom didn’t argue or fight with me over this - she was as worried as was I.

Oddly, both her former physician and this one were worried about Mom driving.  So, rather than make a call and demand she not be able to drive (as would be the safest and right thing to do) they kept phoning me to figure out how to keep her from sitting behind the wheel.  I admonished them both for complaining to me about what they should be doing.  And, much to their astonishment, when Mom went in to renew her license (at age 82)  she was renewed without comment or complication - the state of Washington simply gave it to her!  I was, to understate my feelings, dumbfounded.

Mom was put on Lorazepam, which she declared to be her “happy pills”.  They seemed to make her feel much better.  She found herself addicted to them - but as she was so secretive about her dosage, etc., there wasn’t any real way for me to  understand just how affected she was. 

When her friend, Phillis, took her to the psychiatrist, her prescription was dropped and she was put on valerian root.  This actually seemed to be beneficial - she was calmer, less anxious, and well-grounded.  She then went to see her new physician who took her off the holistic and back onto Lorazepam, as Mom wanted this for the effect. 

The effects of the valerian root caused Mom to relax, for the most part.  She seemed more in control; there weren’t the many phone calls every day as there had been on the other medication, nor did she have the amount of confusion.  So, when the doctor changed the meds back, I wasn’t very happy, although Mom was elated.

In the winter of 2013, we discovered Mom had gone through a 2 month supply in 3 weeks, only to have the doctor refill the script (her actual doctor was on vacation, so this was her substitute’s doing, but still - don’t they keep and refer to records to stop this sort of shenanigans?).

My concern was that Mom was having complications associated with the medications, which was why I appreciated the psychiatrist’s change of meds. 

To go back a little earlier - to Christmas of 2010, Mom and I had a consult with her then physician (she liked to fire them when they brought up issues like her driving, or expectations that she would visit a psychiatrist).  I was worried that the Lorazepam was causing her delusions (yes, she had them back then - believing we were spending Xmas at MY house, as we sat in her dining room eating breakfast and looking out to her garden).   Mom sobbed the whole time - she was confused and worried. 

The doctor told me that she needed to see a psychiatrist first, and then he’d like to recommend a neurologist for her.  We agreed (I had thought) his office would phone me with the information so I could take Mom.  Nope!  Despite my power of attorney they never once phoned.  Instead, they called Mom. Mom rejected the thought of the psychiatrist because she believed we (all the sons, friends, relatives, etc) would go into a room and talk about her while she remained in the waiting room.  To her this made sense, and no matter what I said it never changed.  So, let’s just say that because the doctor didn’t follow through with what we believed to be his obligation, Mom wasn’t able to see anyone until her friend, Phillis, convinced her and got her in - in 2012.   God Bless You, Phillis!

Now, the next tale is the physician in Portland who told me that Lewy Body Dementia was just another name for Alzheimer’s.  That didn’t go over well.  Let’s just say after my reaming she ran to her office and began researching.  Funny how threatening malpractice can motivate.   We dumped her then and there.

Next came her visit to the ER last summer (2015) for a Temporary Loss of Consciousness (T-LOC).  Apparently, the doctors there hadn’t really delved into Mom’s history of LBD, where she was sent from, and what was going on - they just told me it was just “one of those things”! And that she’d be just fine. 

Well, after that day, Mom wasn’t going to be herself any longer - that was the point of major transition. 

So, you see, the medical community hasn’t really caught on.  Thankfully, we were able to begin working with Dr. Satterfield at Providence, a marvelous gerontologist, who worked with Dr. Borroughs, her neurologist, to help Mom on her path.  She understood the changes, the problems, and we were able to form a partnership that worked. 

Today, one must also have an HIPPA  release form, which is free (click  on the link).  Many clinics have their own, but if you have this one handy it should help. 

You must be able to challenge your doctor when you don’t believe things are correct, or if you believe they are in error, as well.  Remember, You pay THEM!  They work for YOU.  They have years of schooling but still are always learning, just as we are.   They don’t know everything, so if you can enlighten them - do it. 

Also, if they seem rather dense on the subject of dementia (not understanding the varied types), then ask for a referral to a gerontologist and a neurologist.  Don’t worry about their feelings - unless those are more important to you than your or your loved one’s health.  They’ll get over it.

So, I guess this means I’ll have more posts on lessons learned, just to help those of you out there for whatever reason you’re reading.

God Bless and Stay Healthy!