This is complicated, but we need help..

[mamasbabygirl]

Situation:

My mom is full of steroids right now to help with the brain swelling, so I do not underestimate the power of those on her emotions, but....

My family is falling apart! Stepdad is caregiver who does anything h can to help mom, does all of the cleaning, laundry, meals, Dr. visits. I help as much as I can now that I am back to work. My brother who is 19 lives there and is in a few words very spoiled. Stepdad gives him money, he took my mom's car since she can't drive it. Last week he got a speeding ticket after my mom pleading with him for months to slow down bc she is afraid something will happen to him. He said he'd pay it, but stepdad wants to pay it. Mom is afraid he will never grow up bc stepdad keeps bailing him out. Mom has decided she "IS DONE". She will not speak a word to wither of them, other than when they ask if she needs anything, she yells get the f out! She was telling my 5 year old last night that he shold not trust Uncle Grant bc of the horrible person he is. In mom;s words, she is sick of being manipulated and lied to by both of them. She said she will not allow stepdad to go to Dr. appointments and when Dr. has claled 2 times this week, she will not speak with them. She is supposed to have radiosurgery, but we don't even know when bc she will not take the calls. Dr. called stepdad last night and reduced her to 1 steroid. Mom called me this morning and asked me if I wanted to go to a festival tonight, going about how she'd get a bunch of money out of the ATM. Stepdad calls me minutes later asking why she is getting dressed, where she is going, how she is doing.

This is ridiculous. I know she feels out of control, she always controlled the money and now he does. He used to freely spend money, but now that he manages it, he is a miser in her words. When I try to talk to her and make the peace in their home, she feels that I am betraying her and ganging up on her too. What should I do?

[SDianneB]

I surely can't tell anyone what to do, other than to say that my family is going through its usual chaos with our mother right now. She's almost 92, in fairly good health, except for a few things that she will NOT acknowledge, and won't do what the doctors recommend. We have just put her into an assisted living facility, and she's had to stay in a nursing home bed until her Medicaid is approved. Of course, she hates that too!

I have stewed and stewed about how to make things better, but I finally realized that I can't "fix" everything. I can't change her. Sometimes, the meds she takes make her a different person when I talk to her. I can't sit here feeling guilty that I'm so far away and can't be there with her, because if I neglect my own health right now, it would be a disaster.

I think she understands all this, but at age 92, change just isn't something she wants in her life, and I don't blame her one bit. I try SO hard not to treat her like a child, I call her and keep her updated on the status of the house sale, and things like that.

But again, the bottom line is, and maybe this is somewhat true for you as well -- you just aren't going to change people. If it's the steroids, then just know what to expect. You can't fix the relationships people have with other people either -- I think you just have to love them, be there to listen, offer advice if it's what they want, hold their hand, wipe their brow, or whatever.

My brother & sister were raised in the 30s -- I came along in the 50s. I have a different relationship with my mother than either of them had. So, I will just enjoy that as long as she and I are still around, and will try to avoid the squabbles around me to the extent I can.

I feel for you -- truly. It is SO difficult to care for another person anyway, much less when you pile on the additional factor of medication that alters their behavior.

God bless you all.

Di

[cindi o'h]

Hi Lori.

I certainly can feel your anxiety and helplessness in your post. Your mom is out of control and for sure, the steroids are to blame. Do you have access to her doctor? That is about the only thing that I can think of. It seems as if maybe she is having some paranoid thoughts and distancing from reality, maybe some kind of psychosis. This is not the mom you know. There may be something that her doctor can do to help her.

I don't know, honey, that is the only thing that I can think of. You hang in tough. Love your mom. Love your mom. It is tough. This is not her.

You're a good girl.

love, Cindi o'h

[mamasbabygirl]

I can call her Dr., but stepdad already did and they are lowering her steroid dose as quick as they can. They have to wean her off. Unfortunately, I just don't think she will get over it. She truly feels betrayed, so I guess all I can do is support both of them as I currently am. Please pray that my mom does not hear me talking to stepdad bc she would behead me...I love you guys, you are always here when I need you.

Love, Lori

[SDianneB]

Just a little levity, if I may ...

You've gotta love moms. They get sick, get in trouble, need our love and support, act up, etc., yet at the end of the day, they are still MOM, and we are terrified of them! Ha... Well, not really terrified, but there isn't much that will instill so much fear into a person as thinking their mother will disapprove! I bet you all know exactly what I mean.

Di

[Fay A.]

Lori,

I believe you when you say your Mom really feels (at this time) as if she has been betrayed. But once your Mom comes off the steroids she may no longer be so convinced that she has been betrayed. Really. It may take some time, but reason eventually prevails..usually.

[Patkid]

Sweetie,

So sorry for your heavy load.

We offer prayers and love

Pat and Brian

[cindi o'h]

I think also, Lori, that there may be an anti-psychotic drug that may help to expedite her recovery. Shineladysue's Mike went through something horriffic recently and I think he may have had a bad reaction to the drug, however.

Yes. Be friends to all of them. Your Mom needs an ally right now. Later she when she comes out of this, she will be able to see in herself that she was not in her right mind. But, for now, this is her reality, and she needs a pal.

love, Cindi o'h

[CharlieD]

Lori,

I can identify with what your mother is going through. Had exactly the same situation when I was on Decadron. I became critical of everything my wife tried to do for me and God knows she has been an angel. I knew at the time that I was doing it and I knew that the steroids were the cause. The Doc told her to be patient and thank God I got off the steroids and am back to normal now. I think TAnn had a similiar reaction. I hope the rest of the family realizes the cause for this side effect and tries to understand that it is temporary.

Hang in there and keep the Doc up to date on her reaction to less steroids. There must be another steroid that would achieve the same results without these horrible side effects.

God Bless.

CharlieD

[mhutch1366]

Lori,

Your mom is on steroids. They can be h-e-double hockey stick. The sweetest woman I know, who is a lady in every sense told the apple of her eye, her only daughter, to get the F out of the house, threw things, wept profusely....

It is essential, essential, essential, she talk to her doctors when they call. Tell the doctor what's going on. You have GOT to get her to realize that the steroids are making her behavior extreme, and I do mean extreme. Even when you're aware and expecting it, the steroid changes to personality can come as quite a shock.

Hang in there. Explain to everyone what's going on, it's the drugs talking. She'll either weep or rage. Doctor should definitely be informed and intervene if necessary.

Both I and my friend have had such profoundly bad experiences with steroid altering personality, I hate them. They did their job though for me, to reduce lung inflammation, and for my friend, to reduce swelling in her brain. It was a trial for her family as it was for mine.

Just hang in there, and work with the doctor.

Your mom isn't rational when she's refusing to speak with the doctor.

Good luck, and I hope things calm down soonest.If not sooner.

Prayers and hugs,

XOXOX

MaryAnn

[Don Wood]

Yep, the steroids are doing a number on your mom, and hopefully this will all pass. Everyone is on edge with the cancer thing. You all are in my prayers.

As for speeding tickets, I can speak as a father and grandfather -- if you get a speeding ticket, it's YOURS. I told each of my three kids this when they starting driving, and I never paid their tickets. If you bail them out, they learn nothing, except that you will bail them out again. I think it is dangerous to bail them out, because that just encourages them to continue to speed and be wreckless. If it hits them in the pocketbook, they will think twice about it. Frankly, I think it is irresponsible of the adult to encourage this by bailing them out. My kids have never had a major accident. My two cents. Don

[trishnmiller]

I have dealt with my husband's irrational behavior so I know the helplessness you are feeling. Here's the thing as best I can figure it out from reading all of the postings; What ever "negative" traits your mother probably already has are being enhanced greatly by the steroids. My husband has never had a check on his temper but when he was on steroids he was just plain crazy/scary. Thanks goodness that is over and he had the gamma knife...very successful. But after the procedure most doctors do have the patient on steroids for a week or so. It was worth it in the end but not much fun going on the rollercoaster of his moods.

Trish

[shineladysue]

Lori,

Steroids can cause some, as Cindi said, "horrific" side affects. I am almost ready to publish a book after living with the affects they have had on Mike. I'm sending you a PM about this. Hang in there and try to be patient with mom. The good news is that it will get better if and when the dosage is lowered.

Love,

Sue

[bunny]

that is complicated. it must be incredibly painful for you. hang in there, be a friend to your mom. everyone else's issues are theirs to deal with, you have enough on your plate.

keep on keeping on, girl, you're doing such an amazing job for your mom!

xoxo

amie

[J.C.]

Lori,

I understand for the steroids effects, but

I do not understand your stepdad, he should obliged your brother to pay his speeding ticket, that way

he will learn a bit of responsability otherwise

he will keep going full speed and that is not helping

your mother.

Hope that with the reducing of the steroids all will

soon get back to normal for your mother, give her as much love as you can as I'm sure she is counting on it.

Take care.

J.C.

[Snowflake]

Lori,

On the brother taking her car because she "can't drive it": Take the keys. Whether she drives it or not, it's HER car - if she didn't loan it to him before this, it's probably p*ssing her off royally that he now "owns" HER car while she's making the payment!

I know that not talking to those she lives with is a pain in the rear, but if she's not talking, she's not cussing and swearing at them as much, either...

I'm not on steroids right now, and enabling behavior towards irresponsible kids in MY household sets me off and puts me in a pretty p*ssy mood. I guess if I were to be on steroids, flames would actually jump around me!

I hope it gets better soon and that some of these breaches can be fixed. Hang in there.

[mamasbabygirl]

Things are NO BETTER. It has been 48 hours since steroids have been reduced and she is still at it. Last night, she called to go to dinner. I figured she would not tell stepdad and planned on calling him from the restaurant. On our way there, he calls just frantic, "Where is your mother?" I guess he thought she wondered off or something. I apologized and said she was with me, while she is in the back seat yelling "you mfer, quit traking me down". Today she calls me and asks when I am taking her to the store. Stepdad calls me to ask if I am coming over so he can get a break, he says he is leaving right then and I asked him to wait bc I am 45 minutes away picking up my stepdaughter. He said he was leaving bc that is the way she wants it. I said, it is not rational and not healthy for her to be alone in case of seizures..per oncodoc. He calls back and says he is not leaving and for me to take my time.

Thanks for so much input. I am definitely going to call a counselor on Monday.

At dinner, I tried everything I could to advocate for how good stepdad is to her, but how I understand how she feels manipulated and out of the loop. I even asked "If something did happen to you, would you want them to feel guilty the rest of their lives?" and she pretty much said they made these beds and must lie in them. God help us all!!!!!!!

[cindi o'h]

oh jeez Lori!!!

I wish I could draw a picture. It would be a curly long haired half balding guy pulling his hair out by the roots with both hands over and over and over again!

There seems to be no end!!! When it comes down to hitting someone, have you chosen your target yet???

Do you have a neighbor's dog that you could kick? Any yappity ones in the neighborhood?

Hang in there. Counsellor on Monday sounds good. So does a bottle of bourbon!!!

I feel for you. I really do.

Cindi o'h

[Patkid]

Oh, honey

How can you stand it?

Your mom is so loving, just remember the drugs are doing this to her.

I am so sorry.

Praying praying praying.

Pat

[Leslie221]

The steroids are impacting YOUR emotions, too. The effects of your mom's steroid behavior are hurting you and your emotions. I'm a big advocate of seeing a counselor a few times to get good advice and have a safe place to VENT so the lid won't blow off the kettle. Your health insurance will pay for it and, if not, contact your city or county health clinic for a referral. Of course, venting HERE is free, but pounding the keyboard may not be as satisfying as saying it out LOUD!

Her are a couple of articles I found on the net that might help. Hope so!

Leslie

Coping With Personality and Behavioral Changes by Edythe Vassall

After diagnosis and treatment for a brain tumor, a person often may not be the same. Changes in behavior and thinking occur in the majority of patients at some point during their treatment. The extent of changes can vary considerably from person to person. Changes can be as subtle as mild forgetfulness or as dramatic as deep depression or abusive, violent outbursts. This article will look at the reasons why behavioral and personality changes occur, and what patients and caregivers can do to cope with them.

WHAT CAUSES BEHAVIORAL AND PERSONALITY CHANGES?

Tumor location influences the type of symptoms. Here is an example:

While on a sailing trip with his wife Diana, Ray Rosenkaimer suffered a terrible headache. He became too disoriented and confused to continue sailing, and Diana took over the helm. The next morning Ray awoke feeling better and thought everything was fine. Instead, he had a frightening and shocking surprise.

“As I drank my coffee and began to look at the morning paper, I was struck with the horror of not being able to read one word. I could not believe it. The words held no meaning.

“I looked in my wallet to see if I could recognize myself on any photo ID or at least read my social security number. To my amazement I comprehended nothing. I was unrecognizable to myself. The person sitting across from me at the breakfast table looked somewhat familiar, but I neither knew her nor her name. I thought I had lost my mind.”

A large meningioma growing in the left temporal and parietal area severely affected Ray’s memory and language centers. Effects of pressure or “disconnection” of interrelated brain areas can cause problems that might not be expected. The illustration below identifies brain functions and their locations.

BRAIN FUNCTIONS

Frontal lobe

Movement, intelligence, reasoning, behavior, memory, personality, planning, decision making, judgment, initiative, inhibition, mood

Temporal lobe

Speech, behavior, memory, hearing, vision, emotions

Pituitary gland

Hormones, growth, fertility

Parietal lobe

Intelligence, reasoning, telling right from left, language, sensation, reading

Occipital lobe

Vision

Cerebellum

Balance, coordination, fine muscle control

Brain stem

Breathing, blood pressure, heartbeat, swallowing

Tumor size and type are other factors. Larger tumors typically cause greater changes in thinking, yet a small tumor in a key language area can result in severe loss of function. Tumors that grow slowly such as pilocytic astrocytomas may not cause as much trouble because the brain has time to adapt to the tumor. However, fast-growing tumors such as glioblastomas put patients more at risk. Likewise, pituitary tumors can have an effect on personality by causing the overproduction or underproduction of hormones. Hormonal imbalances can cause problems with mood, emotions, body weight, and sexual function.

Treatment side effects

Surgery can reduce the pressure and swelling in the brain, which in many cases will alleviate the symptoms.

“Directly after surgery,” explained Ray, “I could recognize myself and my family. My speech improved as well as my reading. It wasn't 100% but it was great to have some of it back.”

However, surgery can also cause changes. The type of symptoms would depend on the area affected.

Radiation therapy can produce brain swelling (edema), which can cause acute or sudden symptoms including headaches, irritability, and vomiting. After radiation therapy has been completed, many patients experience fatigue. These symptoms can impact a patient’s behavior. Steroids can often counteract the symptoms.

Chemotherapy is known to cause a decline in physical function. Nausea, vomiting, loss of appetite, and anemia can lower one’s energy level. Hair loss can have a negative impact on a person’s self-confidence and ability to socialize.

Chemotherapy can also affect thinking and personality. The term “chemobrain” is being more frequently used to describe this phenomenon. Cognitive and emotional changes reported during and after chemotherapy include memory loss, slowed thinking, reduced attention, anxiety, depression, and fatigue. Biologic therapies such as interferon alpha have been associated with declines in memory, reasoning skills, motor abilities, and mood disturbance. A combination of medication, modifications in behavior, and simple lifestyle adjustments can help the person dealing with these issues and symptoms.

Side effects of medications

Steroids such as dexamethasone (Decadron®) are commonly prescribed to manage edema. Steroids can cause patients to feel anxious, restless, or depressed. In such cases, the doctor may decrease the dosage or may prescribe anti-psychotic medication to control side effects.

Similarly, anti-epileptic drugs (AEDs) can cause unwanted side effects if the doses are too high or too low. AEDs can also react with chemotherapy drugs such as procarbazine and BCNU. These drug interactions can result in sleepiness, depression, confusion, and problems with gait, speech, and vision. Occasionally, symptoms include aggression, insomnia, and psychosis. A doctor may change the dosage or the type of AED to resolve these side effects.

Psychological trauma

The patient’s reaction to the diagnosis of a life-threatening illness can cause dramatic changes. Emotions may remain close to the surface and result in excessive crying or laughing, anger, or depression.

Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counseling, spiritual help, and support groups can help tremendously. So can anti-depressant medications.

IDENTIFY AND MANAGE THE CHANGES

Discovering the source of the problem is the first step. An excellent way to evaluate changes in brain functioning and to document cognitive strengths and weaknesses is to consult with a neuropsychologist.

A neuropsychologist is a specialist who studies the physical effects of brain injuries on mental abilities. Neuropsychologists conduct a series of paper and pencil or computer-based tests examining memory, thinking speed, attention, concentration, language, motor skills, and mood. The assessment also evaluates the individual’s ability to plan, reason, initiate, and organize (these are called the “executive functions”). Based on the test results, the neuropsychologist can give recommendations for therapies, medications, or strategies to help the person and family adapt to, or make up for, certain losses.

“It’s important for patients and family members to discuss not only prognosis with their physician, but also the impact the tumor may have on thinking and personality given its location within the brain,” advises Anne Kayl, PhD, a neuropsychologist at MD Anderson Cancer Center in Texas. “For most patients and families, this type of discussion can be a big relief. They recognize the changes are a result of something real and the patient realizes he or she isn’t ‘going crazy.’ Once we identify the problems in cognition, we can provide some ways to work around the deficits.”

When choosing a neuropsychologist, it is wise to seek one who has experience specifically with brain tumor patients. This is because brain tumors present differently than other neurological conditions such as stroke or head trauma.

Complications of memory loss

Memory loss is a common brain tumor symptom. Patients and family members often don’t understand why remote memories from years ago remain intact, yet the person can not remember where she puts things, forgets appointments, or keeps repeating the same information over and over again.

“The patient isn’t being difficult or careless,” explains Dr. Kayl. “These symptoms are a function of the disease process.”

Dr. Kayl presented a case study that represents a typical experience of mild memory loss compounded by anxiety:

Ms. Jones (not her real name) was diagnosed with a left frontal region tumor. She was treated with surgery, radiotherapy, and chemotherapy. Like many individuals diagnosed with a frontal lobe tumor, Ms. Jones reported language and memory problems. She had trouble finding the correct word in conversation and trouble recalling people’s names. Despite these mild impairments, Ms. Jones was fully capable of expressing her thoughts and carrying on an enjoyable conversation.

A neuropsychological evaluation failed to reveal any dramatic changes or decline in her thinking skills. However, it became clear that Ms. Jones was very troubled, self-conscious, and depressed about the changes in her memory skills and speech. She tried to cope by withdrawing from social activities that she used to enjoy. She avoided situations in which her memory loss might become apparent to others. When she found herself in social situations, her anxiety made things worse, creating a cycle of increasing anxiety and increased speech problems.

“Relatively mild cognitive changes were exacerbated by her depression and anxiety,” Dr. Kayl explained. “In such cases, supportive psychotherapy can be extremely helpful. I recommend a type of therapy called cognitive-behavior therapy, or CBT. This type of therapy is aimed at examining the interaction between thinking and behavior.

“Research has shown that this style of direct, problem-focused therapy is very helpful in treating depression and anxiety disorders. For many patients, CBT can be enough. But for some, medications are needed to ‘jump start’ their mood and enable them to become active participants in their treatment.”

With the help of a neuropsychologist, Ms. Jones was able to see how negative thoughts actually made her speech problems worse. Using cognitive-behavior therapy counseling, she developed more effective ways of dealing with her diagnosis. Relaxation training and visualization techniques helped reduce her anxiety. As her ability to manage her symptoms improved, she was able to increase her participation in family activities and community-based events, enhancing her self-confidence and quality of life.

People suffering from memory loss remain as independent as possible by taking advantage of the many excellent tools that can help compensate for problem areas. Devices such as date books, calendars, personal organizers (such as a Palm Pilot), checklists, watch alarms, and weekly pillboxes are useful as reminders. Setting up a routine and sticking to it can help greatly.

For emotional health, patient support groups can provide a welcome outlet to socialize. It helps to talk with others who have similar experiences and can share their triumphs as well as their pain. However, sometimes a person can feel overwhelmed, and a support group is not enough.

Dealing with depression and fatigue

The losses associated with a brain tumor can have a major impact on patients. A person who was the head of the household may lose the ability to work and to handle the family’s financial matters. An independent individual may become unable to drive a car and suddenly find himself totally dependent on others. Such serious losses can lead to frustration, anger, and depression.

Depression is more than normal sadness; it is a medical condition that produces visible symptoms. If left untreated, depression can suppress the immune system and lead to other health problems. Fortunately, depression is usually managed effectively with antidepressant medication. Talk therapy with a mental health counselor can also be of value.

Fatigue can severely limit a person’s ability to function. It can be a side effect of depression. Fatigue can also be a side effect of treatment or a symptom of anemia.

A physician can prescribe stimulants or other medication to combat fatigue. Also, exercise is helpful in restoring energy and overall vitality. It is important to consult with a doctor before starting an exercise regimen. By monitoring their energy levels during the day, patients can choose the times when they have the most energy to do tasks or activities that are more demanding.

Confusion and disorientation

Some patients complain of distractibility and an inability to focus. This can sometimes be caused by overstimulation – too many things going on at the same time. Many people who have had brain surgery have trouble managing multiple bits of information at once. For example, patients are often quite comfortable in one-on-one conversations, but become overwhelmed in group settings.

To handle overstimulation, patients themselves can take stock of what kinds of noises or situations cause the most problems and try to reduce those distractions. For example, ask people to turn off background television or radio noise when visiting or talking on the phone. If public places such as stores are confusing, try to shop when stores are less crowded. When feeling overwhelmed in a particular setting, a person may want to leave for a little while and find a quiet place to relax.

People with problems in executive functions can try using “process thinking.” This is a technique in which they speak out loud and create a step-by-step guide to the task they want to accomplish. Speaking out loud also forces a person to slow down his or her thinking, which reduces chances for impulsive errors.

Caregivers might also need to adjust their thinking. For example, asking a confused person to “clean up the kitchen” can cause frustration and anxiety for both parties. It is much better to make a written list, breaking the job down into several simple, clear tasks: 1) wash the pans in the sink, 2) put the clean dishes in cupboard, 3) wipe the countertop, etc.

Aggressive or combative behavior

Some behaviors present special challenges. In rare cases, a person can suffer from agitation or paranoia. Behavior can become aggressive or combative. These behaviors can be caused or intensified by various medications. Doctors manage these symptoms by modifying drug dosages, or by prescribing antipsychotic drugs or tranquilizers.

Aggressive behavior is particularly difficult when safety becomes an issue. The best strategy is to pay attention to warning signs of growing anger or threats of violence. Tell your doctor, and try to resolve the problem before it escalates.

When dealing with an agitated person:

Try to create a calm environment. Reduce noise, bright lights, excess movement, and the number of people in the vicinity. Alternately, remove your loved one from stressful situations.

Speak calmly and maintain eye contact. Assure the person of his or her safety. Orient the person by identifying yourself and stating your intentions.

Find out if something specific is bothering the person and resolve the problem. For example, the person may be hungry, thirsty, tired, afraid of something, or need to go to the bathroom. Try to calm the person by encouraging him or her to talk and by listening to his or her complaints. Don’t disagree or argue with the person. Let the person talk until he or she calms down.

If the person becomes combative, remain calm. Take a few steps back and give the person plenty of room. Continue to agree and assure the person that he or she is safe.

Assess the level of danger. If the person is about to hurt himself or someone else and it is safe to intervene, step in and say “stop” or “no” in a calm but firm voice. Gently restrain the person if possible.

If you believe your own safety or the safety of others is at stake, do not hesitate to get help. If you call for outside help, make it very clear that your loved one is very ill and confused.

Inform your doctor immediately of episodes of uncontrolled rage, violence, or any dangerous, impulsive behaviors.

Using teamwork to cope

In all cases, it is important to notify your medical team about behavior changes. Chronic illness of a family member can cause emotional distress to the entire family. Dr. Kayl recommends an active role of patients and caregivers in finding ways to cope. “The bottom line for all interventions is this: there is no magic bullet. Each patient will bring different strengths and weaknesses to the table. It’s up to the doctor-patient-family team to develop realistic and attainable goals for coping with cognitive and behavioral changes. What works for one person may not work for another. These are the differences that make us human.”

This article was reprinted with permission from Search, Issue #57 (Summer 2003). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit www.braintumor.org.

[Leslie221]

The steroids are impacting YOUR emotions, too. The effects of your mom's steroid behavior are hurting you and your emotions. I'm a big advocate of seeing a counselor a few times to get good advice and have a safe place to VENT so the lid won't blow off the kettle. Your health insurance will pay for it and, if not, contact your city or county health clinic for a referral. Of course, venting HERE is free, but pounding the keyboard may not be as satisfying as saying it out LOUD!

Here are a couple of articles I found on the net that might help. Hope so!

Leslie

Coping With Personality and Behavioral Changes by Edythe Vassall

After diagnosis and treatment for a brain tumor, a person often may not be the same. Changes in behavior and thinking occur in the majority of patients at some point during their treatment. The extent of changes can vary considerably from person to person. Changes can be as subtle as mild forgetfulness or as dramatic as deep depression or abusive, violent outbursts. This article will look at the reasons why behavioral and personality changes occur, and what patients and caregivers can do to cope with them.

WHAT CAUSES BEHAVIORAL AND PERSONALITY CHANGES?

Tumor location influences the type of symptoms. Here is an example:

While on a sailing trip with his wife Diana, Ray Rosenkaimer suffered a terrible headache. He became too disoriented and confused to continue sailing, and Diana took over the helm. The next morning Ray awoke feeling better and thought everything was fine. Instead, he had a frightening and shocking surprise.

“As I drank my coffee and began to look at the morning paper, I was struck with the horror of not being able to read one word. I could not believe it. The words held no meaning.

“I looked in my wallet to see if I could recognize myself on any photo ID or at least read my social security number. To my amazement I comprehended nothing. I was unrecognizable to myself. The person sitting across from me at the breakfast table looked somewhat familiar, but I neither knew her nor her name. I thought I had lost my mind.”

A large meningioma growing in the left temporal and parietal area severely affected Ray’s memory and language centers. Effects of pressure or “disconnection” of interrelated brain areas can cause problems that might not be expected. The illustration below identifies brain functions and their locations.

BRAIN FUNCTIONS

Frontal lobe

Movement, intelligence, reasoning, behavior, memory, personality, planning, decision making, judgment, initiative, inhibition, mood

Temporal lobe

Speech, behavior, memory, hearing, vision, emotions

Pituitary gland

Hormones, growth, fertility

Parietal lobe

Intelligence, reasoning, telling right from left, language, sensation, reading

Occipital lobe

Vision

Cerebellum

Balance, coordination, fine muscle control

Brain stem

Breathing, blood pressure, heartbeat, swallowing

Tumor size and type are other factors. Larger tumors typically cause greater changes in thinking, yet a small tumor in a key language area can result in severe loss of function. Tumors that grow slowly such as pilocytic astrocytomas may not cause as much trouble because the brain has time to adapt to the tumor. However, fast-growing tumors such as glioblastomas put patients more at risk. Likewise, pituitary tumors can have an effect on personality by causing the overproduction or underproduction of hormones. Hormonal imbalances can cause problems with mood, emotions, body weight, and sexual function.

Treatment side effects

Surgery can reduce the pressure and swelling in the brain, which in many cases will alleviate the symptoms.

“Directly after surgery,” explained Ray, “I could recognize myself and my family. My speech improved as well as my reading. It wasn't 100% but it was great to have some of it back.”

However, surgery can also cause changes. The type of symptoms would depend on the area affected.

Radiation therapy can produce brain swelling (edema), which can cause acute or sudden symptoms including headaches, irritability, and vomiting. After radiation therapy has been completed, many patients experience fatigue. These symptoms can impact a patient’s behavior. Steroids can often counteract the symptoms.

Chemotherapy is known to cause a decline in physical function. Nausea, vomiting, loss of appetite, and anemia can lower one’s energy level. Hair loss can have a negative impact on a person’s self-confidence and ability to socialize.

Chemotherapy can also affect thinking and personality. The term “chemobrain” is being more frequently used to describe this phenomenon. Cognitive and emotional changes reported during and after chemotherapy include memory loss, slowed thinking, reduced attention, anxiety, depression, and fatigue. Biologic therapies such as interferon alpha have been associated with declines in memory, reasoning skills, motor abilities, and mood disturbance. A combination of medication, modifications in behavior, and simple lifestyle adjustments can help the person dealing with these issues and symptoms.

Side effects of medications

Steroids such as dexamethasone (Decadron®) are commonly prescribed to manage edema. Steroids can cause patients to feel anxious, restless, or depressed. In such cases, the doctor may decrease the dosage or may prescribe anti-psychotic medication to control side effects.

Similarly, anti-epileptic drugs (AEDs) can cause unwanted side effects if the doses are too high or too low. AEDs can also react with chemotherapy drugs such as procarbazine and BCNU. These drug interactions can result in sleepiness, depression, confusion, and problems with gait, speech, and vision. Occasionally, symptoms include aggression, insomnia, and psychosis. A doctor may change the dosage or the type of AED to resolve these side effects.

Psychological trauma

The patient’s reaction to the diagnosis of a life-threatening illness can cause dramatic changes. Emotions may remain close to the surface and result in excessive crying or laughing, anger, or depression.

Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counseling, spiritual help, and support groups can help tremendously. So can anti-depressant medications.

IDENTIFY AND MANAGE THE CHANGES

Discovering the source of the problem is the first step. An excellent way to evaluate changes in brain functioning and to document cognitive strengths and weaknesses is to consult with a neuropsychologist.

A neuropsychologist is a specialist who studies the physical effects of brain injuries on mental abilities. Neuropsychologists conduct a series of paper and pencil or computer-based tests examining memory, thinking speed, attention, concentration, language, motor skills, and mood. The assessment also evaluates the individual’s ability to plan, reason, initiate, and organize (these are called the “executive functions”). Based on the test results, the neuropsychologist can give recommendations for therapies, medications, or strategies to help the person and family adapt to, or make up for, certain losses.

“It’s important for patients and family members to discuss not only prognosis with their physician, but also the impact the tumor may have on thinking and personality given its location within the brain,” advises Anne Kayl, PhD, a neuropsychologist at MD Anderson Cancer Center in Texas. “For most patients and families, this type of discussion can be a big relief. They recognize the changes are a result of something real and the patient realizes he or she isn’t ‘going crazy.’ Once we identify the problems in cognition, we can provide some ways to work around the deficits.”

When choosing a neuropsychologist, it is wise to seek one who has experience specifically with brain tumor patients. This is because brain tumors present differently than other neurological conditions such as stroke or head trauma.

Complications of memory loss

Memory loss is a common brain tumor symptom. Patients and family members often don’t understand why remote memories from years ago remain intact, yet the person can not remember where she puts things, forgets appointments, or keeps repeating the same information over and over again.

“The patient isn’t being difficult or careless,” explains Dr. Kayl. “These symptoms are a function of the disease process.”

Dr. Kayl presented a case study that represents a typical experience of mild memory loss compounded by anxiety:

Ms. Jones (not her real name) was diagnosed with a left frontal region tumor. She was treated with surgery, radiotherapy, and chemotherapy. Like many individuals diagnosed with a frontal lobe tumor, Ms. Jones reported language and memory problems. She had trouble finding the correct word in conversation and trouble recalling people’s names. Despite these mild impairments, Ms. Jones was fully capable of expressing her thoughts and carrying on an enjoyable conversation.

A neuropsychological evaluation failed to reveal any dramatic changes or decline in her thinking skills. However, it became clear that Ms. Jones was very troubled, self-conscious, and depressed about the changes in her memory skills and speech. She tried to cope by withdrawing from social activities that she used to enjoy. She avoided situations in which her memory loss might become apparent to others. When she found herself in social situations, her anxiety made things worse, creating a cycle of increasing anxiety and increased speech problems.

“Relatively mild cognitive changes were exacerbated by her depression and anxiety,” Dr. Kayl explained. “In such cases, supportive psychotherapy can be extremely helpful. I recommend a type of therapy called cognitive-behavior therapy, or CBT. This type of therapy is aimed at examining the interaction between thinking and behavior.

“Research has shown that this style of direct, problem-focused therapy is very helpful in treating depression and anxiety disorders. For many patients, CBT can be enough. But for some, medications are needed to ‘jump start’ their mood and enable them to become active participants in their treatment.”

With the help of a neuropsychologist, Ms. Jones was able to see how negative thoughts actually made her speech problems worse. Using cognitive-behavior therapy counseling, she developed more effective ways of dealing with her diagnosis. Relaxation training and visualization techniques helped reduce her anxiety. As her ability to manage her symptoms improved, she was able to increase her participation in family activities and community-based events, enhancing her self-confidence and quality of life.

People suffering from memory loss remain as independent as possible by taking advantage of the many excellent tools that can help compensate for problem areas. Devices such as date books, calendars, personal organizers (such as a Palm Pilot), checklists, watch alarms, and weekly pillboxes are useful as reminders. Setting up a routine and sticking to it can help greatly.

For emotional health, patient support groups can provide a welcome outlet to socialize. It helps to talk with others who have similar experiences and can share their triumphs as well as their pain. However, sometimes a person can feel overwhelmed, and a support group is not enough.

Dealing with depression and fatigue

The losses associated with a brain tumor can have a major impact on patients. A person who was the head of the household may lose the ability to work and to handle the family’s financial matters. An independent individual may become unable to drive a car and suddenly find himself totally dependent on others. Such serious losses can lead to frustration, anger, and depression.

Depression is more than normal sadness; it is a medical condition that produces visible symptoms. If left untreated, depression can suppress the immune system and lead to other health problems. Fortunately, depression is usually managed effectively with antidepressant medication. Talk therapy with a mental health counselor can also be of value.

Fatigue can severely limit a person’s ability to function. It can be a side effect of depression. Fatigue can also be a side effect of treatment or a symptom of anemia.

A physician can prescribe stimulants or other medication to combat fatigue. Also, exercise is helpful in restoring energy and overall vitality. It is important to consult with a doctor before starting an exercise regimen. By monitoring their energy levels during the day, patients can choose the times when they have the most energy to do tasks or activities that are more demanding.

Confusion and disorientation

Some patients complain of distractibility and an inability to focus. This can sometimes be caused by overstimulation – too many things going on at the same time. Many people who have had brain surgery have trouble managing multiple bits of information at once. For example, patients are often quite comfortable in one-on-one conversations, but become overwhelmed in group settings.

To handle overstimulation, patients themselves can take stock of what kinds of noises or situations cause the most problems and try to reduce those distractions. For example, ask people to turn off background television or radio noise when visiting or talking on the phone. If public places such as stores are confusing, try to shop when stores are less crowded. When feeling overwhelmed in a particular setting, a person may want to leave for a little while and find a quiet place to relax.

People with problems in executive functions can try using “process thinking.” This is a technique in which they speak out loud and create a step-by-step guide to the task they want to accomplish. Speaking out loud also forces a person to slow down his or her thinking, which reduces chances for impulsive errors.

Caregivers might also need to adjust their thinking. For example, asking a confused person to “clean up the kitchen” can cause frustration and anxiety for both parties. It is much better to make a written list, breaking the job down into several simple, clear tasks: 1) wash the pans in the sink, 2) put the clean dishes in cupboard, 3) wipe the countertop, etc.

Aggressive or combative behavior

Some behaviors present special challenges. In rare cases, a person can suffer from agitation or paranoia. Behavior can become aggressive or combative. These behaviors can be caused or intensified by various medications. Doctors manage these symptoms by modifying drug dosages, or by prescribing antipsychotic drugs or tranquilizers.

Aggressive behavior is particularly difficult when safety becomes an issue. The best strategy is to pay attention to warning signs of growing anger or threats of violence. Tell your doctor, and try to resolve the problem before it escalates.

When dealing with an agitated person:

Try to create a calm environment. Reduce noise, bright lights, excess movement, and the number of people in the vicinity. Alternately, remove your loved one from stressful situations.

Speak calmly and maintain eye contact. Assure the person of his or her safety. Orient the person by identifying yourself and stating your intentions.

Find out if something specific is bothering the person and resolve the problem. For example, the person may be hungry, thirsty, tired, afraid of something, or need to go to the bathroom. Try to calm the person by encouraging him or her to talk and by listening to his or her complaints. Don’t disagree or argue with the person. Let the person talk until he or she calms down.

If the person becomes combative, remain calm. Take a few steps back and give the person plenty of room. Continue to agree and assure the person that he or she is safe.

Assess the level of danger. If the person is about to hurt himself or someone else and it is safe to intervene, step in and say “stop” or “no” in a calm but firm voice. Gently restrain the person if possible.

If you believe your own safety or the safety of others is at stake, do not hesitate to get help. If you call for outside help, make it very clear that your loved one is very ill and confused.

Inform your doctor immediately of episodes of uncontrolled rage, violence, or any dangerous, impulsive behaviors.

Using teamwork to cope

In all cases, it is important to notify your medical team about behavior changes. Chronic illness of a family member can cause emotional distress to the entire family. Dr. Kayl recommends an active role of patients and caregivers in finding ways to cope. “The bottom line for all interventions is this: there is no magic bullet. Each patient will bring different strengths and weaknesses to the table. It’s up to the doctor-patient-family team to develop realistic and attainable goals for coping with cognitive and behavioral changes. What works for one person may not work for another. These are the differences that make us human.”

This article was reprinted with permission from Search, Issue #57 (Summer 2003). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit www.braintumor.org.

September 3, 2001

The DRUG - A Steroid Tale

John Fetto, JD

My wife recently had her cancer advance to her brain. She was dizzy, vomiting for no reason meaning even when she had nothing to eat for about two weeks. Finally one night when she fell while standing inside a shop with her sisters, she was taken to the emergency room where they diagnosed her as having an "olive shaped" growth of cancer in her brain. At Stanford Hospital they were able to treat with something called "x-knife". X knife is a radiation beam they use to hit the tumor from a variety of angles. Where the beam intersects the tumor dies, and according to their computer model, they have a 95 percent chance of killing it to the extent it shrinks down to next to nothing and does not grow. This was only a few months ago. One cat scan revealed that it had been reduced by at least 50 percent. We go for another next week. If it works it's amazing, it will literally have killed the tumor without breaking her skin. But this article isn't about that. It's about the drug they gave her to hold down the swelling while the tumor died and the side effects it has. No one really warned us about the side effects from this drug called Decadron. I call it THE DRUG, for convenience and because it's effect is so dramatic, so loud, I think it deserves to be in caps. Since then I've encountered so many stories about it, I think the experience is almost universal. I'm not a chemist. What follows is a layman's or husband's description of THE DRUG.

THE DRUG, Decadron is a steroid. Not like the steroids that the athletes abuse. Those steroids build up your muscle or tissue. This one tears it down. It especially reduces the swelling around in the tumor in the brain so that there is almost immediate relief. As soon as they found the tumor, they started my wife on Decadron fed intravenously through her vein (she had a port.) The reason she was throwing up, and people with brain mets throw up, is that the brain swells and part of the brain is pushed against the skill, activating the center which says it's time to throw up. It's like holding your finger down on a button. The Decadron reduced the swelling quickly and she no longer felt like she had to throw up. This was an amazing benefit. After two days they sent her home with a bottle of the steroids which she had to take ever six hours, 4mg at a time, 16 mgs total. This is a lot. Eventually I would count the mgs one by one as she was weaned off THE DRUG.

First word of advice. If you're a care taker, don't let the person who is taking the Decadron to administer the drugs for him or herself. I did. The week after the diagnosis, she seemed much better. There was a two week gap between diagnosis and the X knife (during which time the tumor grew in diameter by another 10 percent, from 3.2 cm in diameter to 3.8. This is a lot, when you figure the volume of it.)

But my wife seemed fine. The house was getting cleaned up. She had friends over every day. I was free to return to work and from my office could coordinate the schedule of office appointments. I insisted that her scans be submitted to the two best hospitals in the area, Stanford and UCSF, despite the fact the local oncologist assured me that if one place could kill it with radiation they both could. He was wrong. UCSF wouldn't try their gamma knife; Stanford would and we went to Stanford without losing any down time.

During this time my wife seemed to be okay. She had boundless energy. She would be up early. Really early, like 4:00 a.m. to make sure she took her pills at 6:00 a.m. They told us she would gain weight with the steroids and she was now eating every four hours or so. Ultimately she would gain more than 20 lbs. But I really didn't worry about this. She would gain it; she would lose it.

The first clue that I had that there might be some more serious side effects to THE DRUG was when I pulled into the driveway to our house and the tree in front of the house was gone. My wife hated the tree. We have small deck out in front and this poor plum tree really didn't have enough room to grow. It was leaning against our house a bit. Anyway my wife hasn't liked it for years. Well, with the steroids now though, anything offensive about the house had to be changed immediately. I later talked to someone on line who explained that when she was on steroids, she came home one night and ripped all the paneling off her kitchen. She had hated the paneling for years, but on steroids her distaste became so intolerable it required immediate action.

Boxes began to arrive. I don't mean a small box. I mean boxes that were as tall as my chest and a yard wide. They were from Martha Stewart. They were from Frontgate. They were from all the places you get those magazines from for home improvement. My wife now had all the magazines by her computer and they were marked with yellow tags. The yellow tags were there to tell her which pages had items that she really needed to and did order. There were so many yellow post it notes it seemed it would be more efficient to mark the pages that didn't have something to order. And every day two or three boxes like this arrived with essentials that she had ordered, usually at 4:00 am in the morning.

This was a huge change for my wife. I'm the spendthrift. For the 14 years or so we had been together she has been the one who holds the spending back. Prior to this time, she would literally sort through the things I would throw away and take them out and put them back. When we went to the store, she would put back the things I would put into the cart and say no, we really don't need that. She would make do, conserve, spend very, very little. Now the sky was the limit.

At first I said, what the hell. If I had a brain tumor, I probably would be guilty of worse excesses. I didn't think of it as part of THE DRUG. I didn't care about the money. I had lost more in the stock market. When I began to care was when I came home one night, a Friday night, perhaps two weeks after the the X knife at Stanford, four weeks after diagnosis. I think the timing of this is important, since it meant that she had been on steroids for approximately 4 weeks. Here's what happened.

I came home and my wife and her best friend Virginia, a true saint, were opening more boxes and trying to get ready for Sunday. Previous to this date, all I knew about the event from Sunday was that she had invited over a "few friends" to watch the Mists of Avalon on TNT. Some of our friends don't get cable, so this seemed like a fun thing. It seemed harmless. Well on Friday, I found the small gathering had grown to a party of 15, that dinner was to be served, and that movers were coming the next day to re-arrange all the furniture in our house (I'm serious), so that there would be room for what would be the largest party we have ever had.

I blinked, looked at them like they were mad, and made the serious tactical error of arguing with them. Up till now it was, "Yes, dear.." but having the largest party we have ever had two weeks after major radiation surgery to the brain, seemed mad. It was, but so was arguing about it. To make a long story short, we ended up re-arranging all the furniture. A whole series of major changes which we planned to the house were done in a 24 hour period amidst loud, drawn out fights. Screaming contests at the top of one's lungs, none of which slowed down, much less derailed the unstopped engine of change which was running amok through the house.

I started to ask on line about the side effects to this drug and received a deluge of helpful often hilarious stories. One person said the nickname for this drug for him and his wife, was the "I'm the boss!" drug. Truly it was. Anyone who met my wife before is usually impressed by how nice, how sweet, how genuinely good natured she was. Well that person was gone, replaced by her evil twin. When I asked a different husband how he handled it, this husband, a Brit wrote me, "I would do everything she asked, and complain bitterly to my friends." Well I wasn't British. I was an American, and a lawyer. A champion of the civil court who didn't back down in the face of large insurance companies or imposing defense counsel. I had also studied martial arts and towered over my 5 foot four inch wife. So I argued, slammed my fist, and then did whatever she wanted, and complained bitterly all over the net, to friends at work, to perfect strangers I met.

Saturday night. After 24 hours of planning, reorganizing the whole house, tossing out half of our furniture and ordering more, I finally got my wife to sit with me and just relax. We folded out a convertible sofa in front of the TV. and began to watch a movie. I don't remember what it was, but my wife seemed to genuinely relax.

She dozed. I think she had been sleep deprived for weeks. Another side effect of the drug was insomnia, but we had failed to get a prescription for sleeping. This is another major mistake. I now began to construct one from Tylenol p.m. and melatonin, my nightly ritual and she slept, briefly. When she woke up, to our now organized and clean house, we chatted. The movie was still on, and somehow we lighted on the topic of tomorrow's party. To which she responded, "What party?" She hadn't remembered planning it.

This is not my wife. If it happens to your significant other, it is not them. It is THE DRUG. Another friend who had taken steroids and who was a college professor, a writer, a psychoanalyst, who possessed a mind like a steel trap, told me that she still couldn't account for two days when she was on THE DRUG. Supposedly, she had gone to a cocktail party and said things that she couldn't believe she said.

And this is the odd thing. As your partner is raving at you, there may be an element of truth in what they say. Not a small element. A deep and painful hunk of truth that you remember long after it's over. It's the things you may think about the person you love, but you don't say because you know it will hurt them. So there you are, working as hard as you can to help this person you love, and they're pointing out all the ugly truths about yourself. The Brit I mentioned before, told me suffering THE DRUG was the hardest thing he did in the long travail of his wife's breast cancer which ultimately took his wife's life. You're just not expecting it. You're expecting to be thanked, to be be thanked profusely, and instead the conversation is much less than flattering.

That was the peak. After that, I took control of the steroids to make sure that she was getting the precise dosage she needed, and as per the doctors instructions I began to wean her off the drug. From 4 mg to 3m every six hours for a week, then week by week down to zero. By now her weight had peaked, and her legs were strangely weak. She thought it was because she had gained so much weigh, but one of the other things they don't tell you is that it tears down the muscles in your limbs, particularly the quads in your legs. Well our house is three stories, built into the Oakland Hills. Literally she found that she couldn't walk up and down stairs. Which scared her. Realize that after the x-knife they say come back in two months and we'll see if it works. Well, how do you know if it doesn't work? Well if the headaches return, the vomiting returns, or there's "personality changes." Well what are the side effects of steroids. Personality changes. Dramatic personality changes. So how do you know if the tumor is growing or if it's just the effect of THE DRUG.

You don't. And the fear lies around the house like some grinning cat that you don't talk about. Another side effect of the drug is paranoia. Well I think anyone who has cancer, much less a brain tumor has a right to worry. Add THE DRUG which heightens the paranoia to epic proportions, and one night you may find yourself unable to catch your breath, and arguing with your husband, that you have to go to the emergency room right now.

Another husband, separate from the other two already quoted, said he had driven his wife many times to the emergency room only to find out it was THE DRUG. When we got there, luckily the same doctor who received her five weeks before (when she was originally diagnosed; now 3 weeks after x knife) was on duty and remembered my good wife. She wanted oxygen, he gave her oxygen though her blood level showed no shortage of oxygen. He gave her valium and reassurance, and to be on the safe side took another scan of her head. it showed that the tumor had been reduced almost in half. This was great, tremendous news. He also gave me a prescription for valium to be administered with the steroids to take some of the edge off the steroids.

Slowly my old wife returned. And with her, her old frugality. Now instead of rearranging furniture my time was spend helping to box up all the things she had ordered and didn't need and taking them to the post office. I tried to argue her out of some of things, I thought were especially kewl, and won some of the arguments. Give and take was now back. We could talk again. We were on the same side again. We had gotten through this part. And perhaps this will help you, if you or someone you love has to take THE DRUG.

[Ann]

Lori, I'm sorry that I don't have any good advice or suggestions on this one but I do want you to know that I am thinking of you and your mom and hoping things are better soon.