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As I enter week four of my 97yo mom living in an Alzheimer's/memory care unit having been diagnosed with vascular dementia complicated by delusions, I am realizing that my advocacy for her is more important now than ever.

Communication gets screwed up, medications don't arrive or they arrive late, and problems arise each screaming for quick solution.

I am also learning that absolutely no one has the situation in hand; not the care home which has nurses on staff and not the doctor.  

The long and short of my mom's week-long hospital stay was a non-stop transfer from the hospital to a Alzheimer's/memory unit after I spent an incredibly stressful week finding money, hauling around trusts and doctor's letters and searching for the right board and care lock-down home and dealing with doctors and nurses. I was a stressed mess, but got through it.

The pile of papers I had to read and sign rivaled a Supreme Court decision. I can only hope I didn't miss something.

The hospital stay also involved a change of anti-psycotic medication from Zyprexa to Haldol, however, it was supposed to be only as needed when she left the hospital.  You see, my mom has long conversations with people, goes to lunch with actresses and has been to at least six of my weddings in the last six months. Other than the dead person she found in her bed, mom has a much better social life than I have... in her mind.

Monday I was at the care home and they had a group singing carols.  I was sitting next to mom singing away and when I looked over at her, she was sound asleep. I kissed her gently and left. Mom absolutely NEVER dozes off like this.

The previous week, my mom began having serious peripheral edema for the first time in her life. No one mentioned low blood pressure to me, but, as it turns out, she has VERY low blood pressure which is also new. By very low, I mean 90/47, 113/43, 90/49.

Detective Work
Today when visiting, I learned that on Monday, at my request, the care home nurse called mom's physician to tell him moms blood pressure was very low. The doc prescribed a new and different blood pressure medication changing from Exforge to Losartan. The problem is, no one told me and the medication was sent to a pharmacy 1.5 hours away. So, off I went--four fripping days later--to pickup the medication and take it with her repaired glasses to the care home.

When I arrived, mom was seated on a couch, out like a light, with her legs up on a chair. When I had seen her a few hours before, she could barely talk. She looks drug addled and incoherent.

I went back to the nurses station and asked what my mom was taking. As it turns out, they have NOT been giving my mom haldol as needed, rather giving it to her every day. Either the hospital, the doctor or someone else made a mistake it looks like.

So, I got on the phone to the doctor's office and, of course, the doctor was out of the office. They will call me back tomorrow. I told them I thought the Haldol might be causing her to have low blood pressure and as a result she was wrought with edema.  Furthermore, all she was doing was sleeping and her speech was almost unintelligible.  

So the things I didn't have to deal with four weeks ago are:
-lower limb (peripheral) edema
-low blood pressure
-Keflex (for a urinary tract infection and a mysterious wound I found on a finger that was swollen and filled with icky stuff)
-unintelligible speech
-fatigue (sleepiness)

I first look up haldol. One of the side effects of haldol is low blood pressure. Also fatigue and difficulty speaking. Also lowers resistance to infection. Bingo.

Then I google edema and low blood pressure.  Bingo.

Then I looked up Keflex. One side effect is fluid retention (edema). Another is fatigue. Bingo.

I check potential drug interactions, but everything seems okay on that front.

Making matters worse, my mom tends to have great drug sensitivity. Now that she is so unintelligible, it's hard to know how else she is feeling. This is just awful.

So tomorrow I will have the talk with the doctor and see if we can straighten this out. It seems to me that it is the Haldol that is the culprit here. Taken on a regular basis, that might make sense.

What is clear, though, is that the game changed. I now have to literally follow everything much closer than I thought I would. That means more trips to the care home and possibly a lot more calls to both the doctor and the care home.

I was hoping to finally be able to go to work full time in the near future. That just doesn't seem to be in the cards, so my poverty status will live on into the indefinite future.

Just when I was thinking there might be a light at the end of the tunnel it left. Dammit.  

Sat Dec 10, 2011 at 8:40 AM PT: UPDATE:  Well, I am off for the care home Holiday party... will let you know how it goes.

Originally posted to on Fri Dec 09, 2011 at 12:17 AM PST.

Also republished by Community Spotlight.

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