Trying To Strike A Balance

The Surgeon increased the amount of fluid that is being drained from the ventricles in Mom’s brain at her appointment last week. He hopes that this will, over time, improve the results we are seeing in her memory. It’s a delicate process as draining too much fluid could result in the collapse of the ventricles (obviously a bad thing), and not enough fluid continues the memory and other problems she experiences.

In response to Mom’s increasing agitation over her car (including cursing & threats, and one day in which she called me over 15 times as well as calling various other local people in addition to calling me), Mom was put on a new medication to ease her anxiety and agitation, which seems to be working. The medication she takes to improve her memory was also increased, but she seems to be having a hard time adjusting to this so I am carefully monitoring her to ensure she is eating while her body adjusts.

She seems to be coming to terms with the reality that she is, indeed sick and needs assistance. I filmed the appointment with the Surgeon and him explaining the Hydrocephalus to her as well as the reasons that she is unable to drive. I haven’t needed to review it with her, yet.

So far her memory shows little to no improvement and she is very frail, but every day I look for any little sign that might indicate improvement, however; it could be months before we see any significant results, so I try to be patient, while continuing my prayers that she will eventually return to us.

What Next?

I’ve been putting off writing this post because it is so painful. As a follow up to my previous entry, Mom has been calling me every day, sometimes twice a day wondering “where her car is”, or “how we’re going to get her car home”. And I explain to her that her driving privileges have been restricted by both her Neurologist and her Neurosurgeon, to which she responds “Why? I’m perfectly healthy.“ Sometimes she remembers that she’s had brain surgery, sometimes she doesn’t. She accuses me of making up her medical condition and insists that her memory is fine and that no Doctor has told her that there is anything wrong with her.

I explain that I am happy to assist her with any of her needs and will take her where she needs to go; but she says that she wants to be able to do for herself. I sympathize with her, but explain that it isn’t possible for her to drive herself at the present time, and she needs to let me help her. She says I am imprisoning her because I don’t “trust” her not to drive the car if I were to leave it at her house. There is a physician’s note on her refrigerator stating that she cannot drive, but as she doesn’t remember the Doctor writing it, or discussing it with her, she doesn’t believe it. I’ve explained she is welcome to discuss the situation at our next appointment, and encouraged her to take notes about what he says while we are there…in her own handwriting so that she’ll have something to refer to after we return home.

Apparently she tells other people who call to check on her that I am very helpful and take her everything she needs. When I am at her house in person she is pleasant and seems to understand. However when she is alone and decides she wants something and her car isn’t there, she calls and the cycle starts over again. She has threatened to call the Police and report the car stolen several times. I’m at a loss on how to handle the situation and would welcome suggestions. I really don’t believe that she needs to be placed outside her home. She CAN take care of some of her basic personal needs, (although I assist with financial and housekeeping tasks) her memory and decision making abilities are impaired. I can’t bear the thought of her getting lost or hurting someone while driving when I’m available to assist her. I’ve tried to explain her medical condition but she says she doesn’t believe it applies to her. :sigh:

A Conflicted Ray of Hope?

Is arguing a positive sign?

Mom has been so passive and confused these past months, but within the past few days she has become argumentative and accusatory. As uncomfortable as it is, I'm wondering if this change in her behavior could be related to increased awareness of her surroundings.

She is very upset that she is unable to drive and that I have her car at my house. I've tried to explain that the Doctor's have restricted her driving because of her medical condition, and that I'm willing to do her grocery shopping and bring her whatever she needs.

I'm not sure if she understands her medical condition or that she's even had surgery to correct it. I'm frustrated that she is resistent to taking the medication she needs to manage her diabetes, high blood pressure and slow her memory deterioration. She repeats that there is nothing wrong with her and thinks that it is "us" that are creating the problems.

Today, she was accusing my husband of being "behind" taking her car away from her. Which is the furthest thing from the truth. In all honesty, I have been the one consulting with Doctors. My husband hasn't consulted with any physicians regarding her care, nor does he have the authority. But it has been the physicians themselves that listen to my reports of her abilities and behaviors and make the determination as to whether she is safe to drive. And honestly, the last time I asked her to come to my house by 2:30pm and she arrived at 4:30pm...not aware of where the time had gone (I spoke with her at 2:00pm and she was "walking out the door"), is just an example of how skewed things had become.

Irregardless, I have to consider that this recent fixation on driving is a sign that her memory is improving slightly, which could lead to further improvement. Which is what we were praying for. Let's hope this is indeed the case, and the improvement continues...and that eventually she WILL be able to drive again.

The Day After...

Thanks everyone. Just got home. What a day.
We had big storms this morning with lots of flooding all around Dallas.
It took me 2 hours just to get into Mom's neighborhood so I could feed her cats.
All the roads surrounding her house were flooded.
I bet I turned around at least a half a dozen times before I found a way in that was safe.

Then I took my laptop to the FedEx store when I was supposed to take it to the UPS store...
After I got that worked out, we got something to eat and sailed on to the hospital.

Mom is pretty confused, and thinks she's ready to go home.
She figures if she can sit in a hospital bed, she can sit on the sofa at home.
She has little concept of the passage of time or even the reason that she is in the hospital.
Some things she can remember ok, others not so much.
She's also dizzy, which makes her a fall risk, and not suitable for release.
She's singularly focused on her cats and doesn't seem satisfied when I assure her that I'm taking good care of them.
They're her "children", and she wants to be with them.
I've tried to tell her she has to take care of herself before she can take care of them, but she doesn't seem to "get it".

The nurses in ICU have been just wonderful.
I applaud everyone who chooses to put up with these difficult people who make such unrealistic (and repetitive) demands of them.
I can assure you, at least in my Mom's case, she doesn't understand what she's doing.

Surgery

Mom's surgery went well.
After it was over, she didn't even realize they'd done it yet!
She's in the ICU right now, but should be moved to a regular room today.

She's still very confused about time, but I did notice slight improvements in simple things.
She has a nice new haircut, and does have some pain.
She worries about taking pain medication...she's afraid of get addicted. LOL

My Sister in Law works in the hospital and checked on her before leaving last night and said she was alert and reading some magazines I left her.

They will be doing a CAT scan this morning to see how much fluid has been drained off in the first 24 hours.
I'll be anxious to hear the Doc's report on this test.

Thanks for all your prayers. I know they are helping.

One day to surgery...

The countdown is on, and I'm anxious and hopeful.
Mom is deteriorating rapidly and she is blissfuly unaware of it.

This past weekend we had a family wedding for her Sister's grandson (her Great-Nephew), and because of her faulty sense of time, she had great difficulty being able to understand what day and time the wedding was. She tried to get ready for the wedding on Friday, but I explained that the wedding was on Sunday, and tried to re-direct her to another task. Then on Sunday, she decided she HAD to do the task I had tried to get her to do on Friday before she could get ready for the wedding...leaving her little time to get ready. It was pretty hectic, and she didn't understand where the time went, but somehow we got there on time. The wedding was beautiful and we had a lovely visit with relatives we don't get to visit with often.

Everything is in place for the surgery. The pending cardiac clearance was received, and now we are now waiting for a call from the anesthesiologist on Tuesday evening before we head to the hospital early Wednesday morning. The surgery itself shouldn't take very long, nor should her hospital stay.

All prayers are welcome and encouraged, both for a safe & successful surgery; and for a positive outcome.

Unfortunatly my laptop got fried this past weekend, so I will be unable to blog, tweet or facebook updates from the hospital, but will post updates as soon as I can.

Surgery is a go...

Today Mom & I revisited the Neurosurgeon to review the results of the spinal tap procedure described in my last post. The Doc recommended that Mom have the shunt surgery and after reassuring her that as far as brain surgery goes, this surgery is minor. Then he proceeded to tell us of all the possible risks, no matter how remote.

We do have to get “cardiac clearance” before we can proceed with surgery; so I have contacted a cardiologist and will be moving forward with this testing next week. If all goes well, the shunt surgery should take place the first week in June.

Mom continues to be surprised that there is anything wrong with her, and that it could be serious enough to require "brain surgery". She is terrified of someone "messing around with her brain". She asked what would happen if she refused the surgery, and I explained that she would slip into an "Alzheimer's fog" and be in a nursing home sooner rather than later. And that if someone had an Alzheimer's diagnosis, they would be thrilled to have this type of treatment option available to them that might offer some hope of independent living again. She claims that she doesn't "feel sick"; but the days just slip by without her awareness, and while I try to provide examples of the symptoms of the condition, she is unable to comprehend that she is actually exhibiting the behaviors I describe.

I am hopeful that the surgery actually does relieve her symptoms and she is able to continue to live independently. My greatest fear is that the NPH symptoms will be relieved only for Alzheimer’s symptoms to arise in their place.

For now, I will focus on the positive that the surgery is proceeding and there is a glimmer of hope that she will have some memory restoration, not to mention greater balance control; which for a nearly 80 year old woman is also very important.

This is Spinal Tap

I took Mom to consult with the Neuro Surgeon and, not surprisingly, he recommended that she have another Spinal Tap called a "large volume lumbar puncture" before proceeding with shunt surgery.

This test will remove approx. 40mL of spinal fluid (a bunch), which will hopefully result in near immediate symptom relief. The Doctor stated that she should show the most improvement during the first day or two following the procedure; therefore, we will spend a lot of time together over that period so I can observe her actions. We will then meet with the Surgeon again to review the results of this test and determine if he will proceed with the shunt surgery.

Mom expressed extreme fear and concern about the surgery and the Doctor spoke with her to attempt to alleviate her fears, describing the surgery in fair detail. She seemed moderately pacified, but I suspect she will forget his explanation and her fears will increase again. Upon leaving the appointment, she said "That's the most I've ever had explained about what's going on with me"; which is not true, her Neurologist and myself have explained on numerous occasions what is happening, what to expect and viewed her MRI pictures vs those of someone without NPH. Sadly, she forgets these conversations.

She does seem appreciative that I am taking care of her, and ensuring that she is getting the treatment she needs. But, she doesn't like the treatment that is being recommended. While no one looks forward to brain surgery, the potential to regain increased quality of life is worth the risks, because without the surgery her prognosis is grim.

I am looking forward to scheduling this test as soon as possible since she becomes more fragile by the day. Here's hoping the next update will hold good news about the outcome of the "large volume lumbar puncture" test.

A Gift from Strangers

Reposted from the Science & Society section of ABCNews.com
March 27, 2009 6:03 PM

They began to show up after the Challenger disaster. In 1988, during NASA's first shuttle flight after the accident, a bouquet of roses was delivered to Mission Control in Houston. Seven red ones, plus one white.

There was a note attached -- best wishes and a safe flight from Mark and Terry Shelton and their daughter MacKenzie -- but it didn't say who they were or where they lived. After a bit of hesitation, controllers put the roses in a vase on top of the flight director's control console, a bit of color amid readout screens and flight plan booklets.

Milt Heflin, a veteran flight director, was touched and intrigued. "Frankly, people didn't send things like that to mission control," says NASA's James Hartsfield. Heflin called the florists who had delivered them. They were at first reluctant to give out personal information.

It turned out the Sheltons were just an American family, like yours or mine, from the Dallas suburbs. Mark Shelton, a computer engineer, had been a space buff since childhood. His wife Terry is in the clothing business. MacKenzie, a toddler in 1988, is now 23 and studying to be a special-education teacher.

"I thought it would be nice to remind them the public is out there, and they care," said Mark Shelton in a phone interview. "It's a dangerous job the astronauts have, and so many people are responsible for their lives, and they take it very seriously."

The flowers have kept coming, one bouquet during every shuttle flight. There will always be as many colored roses as there are astronauts on the mission (most shuttles carry seven), plus one white one. Heflin asked why. In memory of the astronauts who gave their lives, said the Sheltons.

This month's mission, STS-119, flown by the shuttle Discovery, was the hundredth since the Sheltons began their quiet tradition, and NASA invited them down to Houston for a ceremony of appreciation.

"I think it means so much because we never asked for it," said Heflin. "We never expected it. We believe it truly represents the sentiment of a large part of the public, as well as a very personal gesture."

(Photo: the bouquet for STS-114 in 2005, the first flight after the Columbia accident. Courtesy NASA.)

Diagnosis Confirmed - it's NPH

I took Mom to the Neurologist today to review the results of the cisternogram testing last week.

The testing, along with the results of the earlier MRI and neuropsychological testing confirmed a diagnosis of Normal Pressure Hydrocephalus.

We will now interview for a competent Neurosurgeon with experience treating this condition and move forward with planning for surgery.

An interesting developement was that Mom's primary care physican discovered that Mom had a Brain MRI in 2003, so we will be getting copies of that test to compare with the more recent MRI testing to see if there was any spinal fluid accumulating in her ventricles at that time. This test would have been closer to the time of her fall in Mexico that I remember being the onset of these problems. The films should be ready for me to pick up next week.

I will also be giving Mom B12 injections for the next 6-7 months. You can say that she is less than thrilled with this news. But I've done this before and feel confident we will have no trouble with the administration. Now ensuring that she takes her other prescription medications as prescribed is another matter.

Mom continues to be confused by the entire process, and I have to continually remind her of the simplest tasks. I pray that we can schedule the surgery in the next few months so the healing can begin.