Behind Blue Eyes

The above photograph of my Mother and me was taken by my son when she was in the hospital after a fall last month. We were having a particularly good visit when this photo was taken. It is remarkable for several reasons, most notably the empty look in Mom's eyes. It is the look of Alzheimer's. It was difficult for her to find her smile that day. Though she was happy during our visit.

When I showed the photograph to Mom, her only comment was how old she looked.

My son submitted this photograph in the 2009 PTA Reflections Arts in Education Program at his school where it won an "Award of Excellence" Blue Ribbon, and will be submitted for district judging.

CONGRATULATIONS are in order to MJM for capturing such a striking, yet loving photograph.

Reboot

I am thrilled to report that Mom will NOT have to have the VP Shunt replaced at this time.

The Neurosurgeon successfully reprogrammed the shunt yesterday using a different machine and said that he doesn't need to see her again for another month. He set the program so that it would not drain a lot of fluid, and will slowly (over a period of months) increase the amount of fluid being drained again. Although, not to the level it had reset itself to...the reason which still remains a mystery; as does the reason his machine was unable to reprogram the shunt the first three times he tried. He said he would contact the manufacturer of the machine to ensure it was working properly. Obviously, if his machine checks out, this could still mean there is a problem with Mom's shunt. If his machine needs recalibration, then Mom's shunt is probably ok. Only time will tell.

Ok...that's a lot of medical babble, but it's good news.

During the visit, Mom was insistent that there is nothing medically wrong with her. She did acknowledge having a fall...on her Patio at home, about "a week ago". (The fall she remembers occurred last "Fall"). Initially, I told her that isn't where she fell, but when she called me a liar and got upset, I let it go. She thinks that it's "Spring" and time to get her tomato's planted.
I asked if she'd visited the vegetable garden at AC, and she said yes, but it isn't "her" garden. After I gave her the medication the staff sent with me, we went for the CT Scan, and I noticed a chip on her glasses. When I told her about it, and said I should make an eye appointment for her, she said, "You are so good to me." I was worried about how she would act when I returned her to AC, but she got out of the car without problem and said, "I hoped you were taking me home. "
My Mother-in-Law visited her a short time later and said that she had a nice visit with her. She reported that Mom said the Doctor gave her a "clean bill of health".

The staff at AC reports that she is becoming agitated more frequently the longer she has been there (approximately 2 weeks if you subtract the days she spent in the hospital because of her fall). I feel confident that this will pass in time, though it may take awhile. Hopefully, her medications can be adjusted give her some relief from her obsessive thoughts. I pray for their patience.

Overall, I'm pleased with the day, and that's all I can ask for.

Déjà Vu All Over Again

It seems that the VP Shunt that is draining the fluid from Mom's brain has malfunctioned and she will have to have it replaced. It is draining twice as much fluid as it is supposed to, and it is not responding to reprogramming. The Doc's have attempted to reprogram it three times, and each time it has reset itself.

The last time we know that everything was in good working order was on 8/24 when Mom had a routine CT Scan. She had the anxiety attack on 8/27 and remained agitated for weeks. So it seems likely that she hit her head while home alone, damaged the shunt and caused the subdural hematoma's that were evident on the emergency CT scans last week sometime between 8/24 and the end of August when she was hospitalized.

The bottom line is that the VP Shunt will have to be replaced. Surgery is pending for later this week, probably Thursday or Friday. I am waiting for the Surgeon to call back after making the arrangements.

So here we go again.

EDIT 9/22: The surgeon called and wants to do ONE more test to try to get the Shunt working again before going into surgery. Says they've never seen a Shunt do this before and they just want to be certain.

The good news is that my son & I had a wonderful visit with Mom on Saturday morning. She was calm and relaxed. The Nurse told me that she was even laughing earlier in the morning. We were able to talk about the sunshine outside, college football games, my son's activities, we took pictures and just relaxed together for awhile. While she did ask about the cats and going home, she was not agitated, repetitive and insistent about the topic as in previous encounters. Although a small victory, it sure felt good after so many hard battles in the previous three weeks.

Free Fallin'

Mom fell and suffered an acute subdural hematoma. There is also swelling at the front of her brain and a couple of other subdural hematoma's that appear to be a couple of weeks old. This seems to coincide with the onset of her increased agitated state. All very scary.

While in the Emergency room Mom experienced aphasia and was unable to communicate with or understand what was being said to her. I'm sure this was very scary and confusing for her, it certainly was for me. On the other hand, she didn't seem to have much awareness of being in the hospital and only seemed interested in going home. She kept taking the heart monitors, blood pressure cuff and even her hospital gown off and trying to get out of the bed to leave. Eventually, she had to be medicated to calm her down, but would try to fight through it after an hour or so. She definitely has a strong will.

I am not aware of any falls prior to her anxiety attack on 8/27, but she obviously hit her head twice - hard enough to cause significant injury. I do know that she hit her forehead on a shelf in the bathroom at the Psych Hospital on 8/31 because the staff called me and told me. It left a nickle size bruise that I saw when I visited her on 9/1.

The Neurosurgeon ordered another CT scan the morning after her fall. He adjusted the VP shunt back to where it was immediately after it was placed at surgery, then he will slowly readjust it again.

The day after her the fall she was calm in the morning and seemed to understand she was in the hospital, but became highly agitated in the afternoon and had to be restrained. She no longer understood she was in the hospital. Two days later, she was calm again, but doesn't have awareness of being in a medical hospital. I can't imagine how difficult it must be to try to determine any progress from this type of head injury when the patient is suffers from Alzheimer's and is often unable to tell you how old she is, what year it is and the like.

She is unable to look at me without begging me to take her home, and doesn't seem to be able to have any other conversation with me. :(

This turn of events does help to piece together all the changes in Mom's behavior over the past weeks. But what does it mean for the future? Will she heal, will her agitation abate over time? Will she need a wheelchair or walker - will she accept one?
The things I'm reading about this condition are very frightening.

In My Room

Today Mom was released from the Hospital and transferred to an Alzheimer's Care Facility. She met with the Director and Nurse from the facility at the Hospital this morning but was unable to recall the incident that had resulted in her placement in the Hospital...other than "her daughter put her there". As I've previously noted, that behavior is so far out of character for her, she probably can't even conceive it. Also of note is that she was so highly emotional at the time that it was probably never processed...even temporarily. She cannot fathom that she would or could commit such an action. And she couldn't, if it weren't for the illness that has invaded her mind.

But I digress. Today Mom has a new home, with a private room that has a nice view of a large courtyard in which she can walk or sit, and pictures of her family nearby. She will soon have a TV in her room, and personal items that she can enjoy which will hopefully help her feel comfortable and eventually at peace. I know it will take some time for her to become accustomed to her new surroundings, but I am satisfied that she is safe, she will take her medications, and she will eat properly.

Her Sister from Arkansas came to see her through the transition and my Son was also able to visit as she was checked in. However, after this initial transfer, we will not see her for a couple of weeks so that she can learn and become familiar with her new surroundings and the people who will be assisting her on a daily basis. From my initial impressions, they are wonderful people, who are committed to ensuring that the individuals they care for are treated with respect. Slowly we will visit and eventually it is our goal to be able to take her away from the facility for dinner, medical appointments or other special activities.

While this has been the hardest thing I have ever done in my life, I know it is the right thing. Mom told me that I would have to answer to God for what I have done, and I quietly answered her that "yes...I will." I only wish she could understand that He already knows I'm acting with love in my heart.

Caught in a Trap

My Aunt & Uncle from Illinois visited Mom at the Hospital yesterday. It was another difficult visit. They reported that they barely recognized her, having changed so much since the last time they had seen her in Mexico in January. She's lost 25 pounds since then. They also reported symptoms of extreme anxiety, such as persistent hand rubbing during their conversation. Something I've also noted.

She was happy to see them, and repeatedly told them how much she loved me and my son. She pleaded with them to ask me to take her home and be with her cats, insisting that I have the "power" to come and get her; but W&S told her that it is the Doctor that will determine when she is released. She asked to speak with her Grandson on the telephone (which can be arranged). Sadly, she didn't remember that I had been to visit her in the hospital.

W&S reported that she was wearing the fleece pants that I brought her, but is still wearing one of the hospital shirts. One of the Aides came to take her for a shower when they left.

I know it was hard for W&S to see Mom, not only in a Psychiatric hospital, but in her current emotional and physical condition. It's been heartbreaking and startling to watch her decline these past months and weeks.

I am still concerned that she is experiencing so much anxiety and feel that this needs to be addressed further before she is released from the hospital. My prayers are that she is able to find some peace of mind, relax and find some enjoyment in her days. I know that she's currently still in great distress.

I took W&S to visit the Alzheimer's Facility that I have arranged for Mom to live in after she leaves the hospital. They seemed pleased with the choice. We visited with the Director for a bit. Hopefully, we will be able to move her there very soon.

Pacing the Cage

I visited Mom in the Hospital last evening for the first time since she was placed on medication to help her with her anxiety/agitation (2 evenings prior). My previous visit (before medication) had not gone well at all, so with professional advice, I decided to wait until she had been placed on medication before visiting again. (Easier said than done, since her "anger/acting out" is directed specifically toward me as her primary caretaker and isn't really displayed on the Unit, but that's another story.)

At the beginning she hugged me, was weepy and held my hand. We told each other we loved one another. She was definitely happy to see me. (Yay!)

But ultimately the conversation turned to why had I locked her up, that I had the power to get her out (pleading with me to take her home), and that there isn't anything wrong with her. She denied any responsibility for the behavior that caused her to be there...and I've decided not to remind her of it since I don't really see how it can be beneficial. It only serves to upset her further. (In the moment) :(

I got the Nurse to supervise because I wanted her to listen in.

I explained to Mom that the Doctor would determine when she would be released and I only want to ensure her safety but she wouldn't listen. She stated that she hasn't seen any Doctor(s), and that the only Doctor she has is the Doctor she's been seeing for many years and the last time she saw him was "a couple of weeks ago" (which is fairly close - especially since we've been seeing him once a month for a long time).

She denied any problem with her memory and said I was making that up. It got very circular & repetitive very fast, and she became angry/frustrated and laughed at me stating that I enjoy keeping her locked up.

The Nurse supported what I was saying but Mom didn't (or couldn't?) listen and persisted with her point of view. I knew the visit wasn't going to go anywhere positive from there so I ended it and left. The Nurse walked me out and was very supportive stating that Mom didn't recognize her from day to day either.

It's just so hard that she doesn't understand and refuses (or is unable) to accept that she has memory problems.

She has a very strong will that has always served her well in achieving things in life...except for now. Alzheimer's is one challenge she can't overcome simply by sheer force of will.

Changing Channels

The report from Mom's recent visit with the Neurosurgeon was as expected. He stated that the shunt has done all it can do, and he is ruling out hydrocephalus as the cause of her memory problems. He advised us to see the Neurologist for further evaluation of her dementia and he will continue to monitor the hydrocephalus and her walking since the shunt does seem to have improved her fall risk.

After visiting with the Surgeon, we went to her Internist. She had a Anxiety/Panic attack in his office and became very distressed that she would not live to see her grandson grow up. It was very intense. The Doctor adjusted her medications significantly upon witnessing this. I explained to him that while I had not seen her behave with the sadness she was exhibiting in his office, I had witnessed her exhibit extreme levels of anxiety and agitation; so he increased her medications for anxiety/agitation. This occurred on Thursday.

On Friday, she was still highly agitated, even after taking the new medication dosage, although she now was mad rather than sad. And proceeded to inform me that there was nothing wrong with her and she wanted her car returned to her.

On Saturday, the extreme agitation continued, and my husband, and son went with me to her house to try to get her to eat and take her medication. She continued with the above arguments (there's nothing wrong with her, I'm keeping her "locked" in her house, and I have no reason to keep her car from her, because no doctor has told her that she is unable to drive) She also blames my husband for "brainwashing" me into believing that there is something wrong with her.
I did get her to eat and take her medication, but later in the day, she called the Police and reported that we had stolen her car. The Officer we spoke to understood that she had a memory impairment and we offered to show him the diagnosis and Power of Attorney, but he had assessed there was something wrong during his conversation with her, and declined. He gave us a report number and offered some resources and stated he would include our information in his report in case she made another call.
She continued making angry calls to me into the evening until I had to unplug the phone at bedtime.

On Sunday morning I went to her house and had a very pleasant conversation with her.
She seemed to have no memory of the events of the previous three days and took her medication without any problems.

On Monday I arrived at her home and she initially appeared calm. However, I noticed that her bed had not been slept in and she had not taken her medications from the evening before. I brought groceries into the house, and took her medications to her (she refused). She began telling me that I needed to bring her car home, which I explained that I couldn't do that because she no longer had driving privileges, she started yelling and cursing about how I was imprisoning her, had abandoned her, turned against her, and she didn't understand how I could do that after all she had done for me. I told her I loved her and was trying to protect her. She laughed and said I was lying and that I was just trying to get rid of her.
I told her I was going to go put the groceries away and went to the kitchen.
Within a few minutes, she had followed me, and continued her rant. By this time she was screaming and yelled "There's going to be a murder here".
I told her that was inappropriate and asked her to calm down or I would have to call 911. She continued screaming and told me I was trespassing and she never wanted to see me again, that I had betrayed her. I dialed 911 and told them that Mom was highly agitated and requested assistance, she began screaming that she was the victim, why was I calling 911 on her? I had barely given the address when she went and grabbed an knife from the butcher block; I ran out the back door telling the 911 operator that she had a knife. She followed me out the door onto the patio, but didn't pursue me very far. I stayed on the phone with 911 and she went back inside with the knife and came back outside without it and continued to tell me to get off her property, that I was trespassing.
The Police arrived within minutes. I explained that she has Alzheimer's and has no history of violence or mental illness, but that in recent days has been highly agitated. They spent about 30 minutes talking with her and she eventually agreed to see a "Doctor". They transported her to a local Psychiatric Emergency Hospital for stabilization. There was no arrest.

It is painfully obvious that Mom is no longer able to live independently.
She is suffering terribly and it's causing everyone who loves her enormous pain, too.

At the time of this post (Thursday), she is still in the hospital, and not yet properly stabilized.

We have secured a long term care facility that specializes in Alzheimer's/Dementia affected individuals, that I feel good about. Though it breaks my heart that she won't be able to live at home anymore. I kept hoping to put it off longer...

Reality Bites

It's looking more and more like the shunt surgery is not going to help restore Mom's memory. I discussed this directly with both the Neurosurgeon and his associate at our last appointment. His associate was more blunt with me (which I appreciated), but the bottom line, is that at six weeks after surgery they would have expected to see more improvement than we've seen (which is very little). The Neurosurgeon adjusted the amount of fluid that the shunt is draining, and stated he would be willing to make one more adjustment before making a final conclusion, but if the next adjustment does not result in memory improvement, he will agree that Mom is likely suffering from an underlying dementia/Alzheimer's disease.

I contacted Mom's long term care insurance about getting benefits approved, and they sent a Nurse out to interview Mom. The interview was very difficult as Mom became suspicious and angry, assuming that I was trying to have her "committed" and she refused to cooperate with the questions that the Nurse was asking her. Objectively, it was sad, because Mom's frustration began when she was unable to answer basic memory sequencing questions. She then told the Nurse that she continues to drive herself to all her Doctor appointments, picks up her prescriptions, counts out and takes her medications by herself, cleans her house, does her laundry, grocery shops, etc.... without any help whatsoever. (which of course isn't true), but was an obvious defensive attempt to appear competent because she felt threatened. There was lots of yelling and threatening directed at me for trying to control her and "put her away, and get rid of her". Both the Nurse, me and my son tried to tell her we were simply trying to arrange for someone to come into her home to assist her (and me) in remaining in her home so she would NOT have to go into a care facility, but she wouldn't believe us, and further stated she didn't want anyone coming into her home and didn't need any help. She also stated she wanted to get rid of all her Doctors and find one that would tell her she was "fine", because there isn't anything wrong with her.

The Nurse was concerned that Mom actually needs a full time care facility as she isn't convinced that Mom will allow someone to come in to assist, so I told her to write her report as she sees the situation, but I would like to TRY to have someone come into the home before I move her into full time care.

The very next morning after this traumatic incident, Mom seemed to have no memory of what had happened, and we proceeded with the above mentioned appointment with the Neurosurgeon.

She has since conceded that she is sick and needs help. I have asked her if she feels like she needs to be in full time care, but she says she needs to be at home for her cats. I have assured her that I will take care of her cats, but this is a delicate matter for the moment, as she obsesses over it - much more so than she has over the car/driving issue. The insurance company matter is still pending, but I should have some options within the next week, so I should be able to start comparing care agencies soon.

It will be nice to get a bit of help.

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 and 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.

Radioactive Isotopes

Today Mom had a radionuclide cisternogram which is a fancy way of saying that she had a spinal tap where they injected radioactive isotopes into her spinal fluid then took some pictures to monitor how those isotopes travel through her spinal fluid and brain.

The wonderful radiologist in nuclear medicine, Roy, explained to me that the isotopes will travel through the spinal fluid and the the pictures they are taking will document where those isotopes end up; if the spinal fluid is circulating as it should or if it's leaking or pooling in placing in places it shouldn't.

Roy took two series of pictures today and we go back three more times over the next three days to see how those isotopes disperse over time.

I'll be calling the Neurologist to schedule an appointment to get the results of this testing for next week.

Until then...Mom still doesn't understand what all the fuss is about.
Says she feels fine.

Testing 1, 2, 3, and 4

Testing has been scheduled to determine if Mom actually has NPH (Normal Pressure Hydrocephelus), and if she is a good candidate to have a shunt surgically inserted into her brain to have the excess spinal fluid drained.

On Wednesday, Mom will undergo a Lumbar puncture (spinal tap):

This involves removing a large amount of spinal fluid. The CSF will be tested for abnormalities, but a significant "side effect" of this test is that the "symptoms" of the NPH may be temporarily lifted after the procedure. If this occurs, it is assumed that Mom would likely be a good candidate for having a shunt surgically implanted in her brain to drain excess CSF on a long term basis.

Then on Thursday, Friday, and Saturday, she will have a Radionuclide cisternogram.

Essentially, radioactive dye is injected into the CSF in the spine and several hours later pictures are taken to determine how the dye has traveled through the nervous system. This test is repeated over a three day period. As with the above mentioned spinal tap, there should be some symptom relief upon completion of these tests in addition to the actual results of the dye distribution. As I learn more about the differences in what they look for each day, I will update this post.

Continued prayers are appreciated as Mom embarks on this week of difficult and likely painful testing. She is still surprised that she needs all this "medical stuff", as she claims to feel fine. I have emphasized to her the seriousness of the condition, but I fear that since she doesn't "feel sick", she fails to comprehend the gravity of the situation.

Normal Pressure Hydrocephalus

Some of you are aware of the memory problems my Mom has been having.

We've been having a variety of tests done over the last few months and are finally getting some answers....hopefully.

I spent (most) of today at the Neurologist with Mom. The good news is....Mom MAY not have Alzheimer's. (YEA)

But it appears she does have Normal Pressure Hydrocephalus. In short that means she has a build up of spinal fluid in her brain that shouldn't be there and may be causing her memory problems (along with dizziness, unsteadiness & general poor motor coordination).

We need to do some more testing, but there's a possibility that surgery could be done to drain the fluid which MIGHT relieve the symptoms...or at least keep them from getting worse. However, as with all surgery of the brain, there are definitely risks of complications, and it might not help. I'm just hoping she qualifies and is one of the patients that it DOES help.

Please keep us in your prayers.