Need advice
 

My mom had brain surgery for a menigioma tumor. It was discovered after she was found sitting in my sisters driveway asleep at the wheel. Since then she has had the tumor removed but now suffers from seizures which are somewhat controlled by medication.

My family and I have some questions to those of you going through this or take care of a loved one with this type of medical condition. Mom is angry, she's negative, she's depressed and she feels out of control. Because of this she takes her frustrations out on us. No matter what we do to help it's never enough and we are at fault if we dare say anything about it.

If we advise her, she snaps and says we yell at her. She complains that she can't drive and seems to think she can even though her last seizure lasted over 8 hours in which we had to place her into an induced coma. She says we treat her like she's dumb and crazy. We don't think we do but in her mind we are if that makes sense.

She needs help doing her checkbook and keeping up with her appointments. She forgets most things said to her at the doctor and even if my little sister is there with her, mom argues about what was said. She wont be honest with her doctor either. She sees a neuro who put her on something to calm her nerves and she refused to take it as prescribed. Yet she failed to admit this to the neuro and he raised the dose.

She saw her primary doctor and he changed that pill and we're not sure she's taking that one either. She's not eating right, is down and angry and cannot accept what's happened to her. The surgery was two years ago this coming February.

I think we need to call her neuro and primary doctor and get serious with them about mom's condition. They think she's doing fine. She is physically but mentally she's losing it. I must admit to you that she does not act this way with those outside the family. She is a private person and doesn't like others to know her business. Yet, she will talk down me and my sister as if she's the victim and we are being mean to her.

Thank goodness many know mom and know this not to be true. My question to you is how do we handle this? Should we intervene and chance her getting even more angry by talking to her doctors? Or do we sit by and see how things pan out? My little sister has all but stopped talking to mom and I am in the middle seeing both sides. Mom was coming up here to live with me next summer but I am not sure I can handle it if she's not willing to seek some form of help. Yet, I feel guilt because in some ways I know it's not all her fault.

Mom has always been high strung and the one in control. She's lost that control so now I fear it may send her down a path no one can get her out of. I also know I don't handle the confrontations very well. My husband has ms and I know everything about ms, 22 years of it. But brain injury? This is a mystery to me. What can I do to keep mom from getting so upset she loses her temper and control? What are things we should avoid and how do we do handle that if she's coming after us verbally? The two way street is narrowing and I am afraid mom will lose everyone who cares for her if this isn't addressed. My sister and I are all she really has left. Her friends are pulling away and her two sons are emotionally detached (before the surgery).

Thanks ahead of time. :hug:

Sandy

I feel for you. I also feel that only one of these doctor's should be making
the decisions on these medications. So I do believe you and your sister
need to intervene and talk to her doctor's together. Meaning set up a appointment with them both there. They need to know what is going
on and I would also suggest taping some of the times at home when its
just you and mom. Or your sister and mom. This way they can
hear what its like.

I also believe its necessary for her to go through the grieve of losing her independence of driving. But instead of doing this she is taking it out on
you. I can totally understand this too. My now 24 year old son couldn't
drive for just about 1 year, and he was angry and mad. But not near
as bad.

I would definately work on getting things worked through. And I wouldn't
move her in with you. You need to concentrate on taking care of your
husband.

I have to add, it too us(my husbands family and me) many years to convince
his mom that is now 94. That she couldn't get in her car and drive around
town. Note: she is legally blind and has been for about 5 years.

But she was sure she saw well enough to drive. We just worked it out.
Were we were driving for her.

Donna

Thanks Donna. I live in Illinois, mom is in Tennessee. My little sis is in Alabama but only 45 minutes from mom. It's so hard for Jim and I because we're so far away. She'll most likely come up here to live and I am Ok with that as long as these things get taken care of. I'm going to try and call her neuro and see if he'll call me back. Mom sees him on the 21st I think.

Mom is capable of taking care of herself and wouldn't be hard on me as far as caring for my husband. It's the emotional stuff that's going to be hard. She's the mom so it's very hard for her to let go of that control. It's also hard on us because we're not sure where the line is drawn in what we should help with and what we should back away from. I am sure there are times she feels we think she is incapable of doing things.

I've learned so much from all my ms friends here about how to step back and not take over everything so maybe I need to try and do that with mom too. It's just so hard when she gets angry and lashes out to not defend ourselves because she doesn't see her wrong at all. Her doctors say it's all from the surgery. In my opinion if that is true, they need to intervene more and find out what's going on. They have checked for stroke and more brain tumors but the tests have come out clean. I am convinced she needs to see a neuropsychologist.

I'll update after I talk to her doctor. She's going to kill me if she finds out I called her doctor. lol Shhhhhhhhh.

Update: Just talked to mom and had a good conversation with her. She promised she would bring up our concerns at the doctor's appointment and is open to seeing a neuropsychologist. Let's just hope she's not just pacifying me. :wink:

Sandy,
I am so, so sorry that you're challenged by your mother's attitude/mental problems. It sounds as if she might have some difficulty with being out of control of the situation, and frustrated by it. I also wonder if she's had some brain damage that is affecting her ability to handle negative feelings.
I would not only tape your conversations with her, but also tape the doctors' visits. That way, if your mother disagrees with you about what the docs say, you can play it back to her. It also gives you a record of what they say for yourself. You should let the docs know that she is uncooperative at home, and is not taking her meds. My FIL plays these games with the docs, too. Acts like the perfect patient, then grumbles at home and doesn't follow orders. It's so frustrating when you are trying to help them as much as possible, and they fight it.
Sandy, you have enough in taking care of Jim. Have you considered an independent living situation for her? They have buses/vans to take her shopping, to doc appts., etc. I worry that in time she will need more care, and you have your hands full already. Some independent facilities have a graduated system with assisted living and full nursing arrangements in the facility.
You are in all of our prayers. I think that calling the docs and letting them know what's going on is for everyones' benefit.
Good luck, and keep us informed...:hug:

PS Keep a log of all dr. appts and conversations you have with the docs about your mom.

Thanks Deb. She is already living in an assisted living arrangement with buses, etc. They check on her everyday and she seems to like it there. She's lonely, that's the gist of it as far as her coming up here to live with me. She is capable of caring for herself. It's a tug of war getting her to let go but we also have to be understanding of what's she's gone through as well and Lord knows I am trying. haha

Her brother lives here in Joliet, I am here and her oldest son is also here in Peotone so I will have support to help care for her should that time come. She has already said if she gets to where she cannot do for herself we must, at her request, place her in the nursing home in her hometown. She's very serious about that. The only reason she was coming up here was so she wasn't alone down in Tennessee. All of her closest relatives have passed on and my sister is the only one left that she can really "hang" with so to speak. She used to live here many years ago, all of the children were born and raised here.

So, the living situation isn't so much a problem if she can get her nerves under control. Today she has been an angel and even listened while I talked about my concerns. I am beginning to understand that when she gets agitated it's best to let her be and go back to it another time. We all think the brain surgery is at fault for much of what's going on. She took her AD last night and she was fine today so we'll see.

I am still calling the doctor to voice my concerns. He wants her to live on her own as long as possible. I agree, we all agree to that. I've looked into places around here and they have the same type of apartments in the area if she feels she needs to be on her own. She admitted today that she's lived on her own so long that she doesn't know if she could do it. She said it wouldn't feel like her home even though Jim and I have told her it would be.

She is coming up to spend the holidays with us. She'll be here about a month and a half. Let's all pray it goes well without any issues.

Thanks Deb. :hug:

:hug::hug:Sandy

I thought I share this site with you. It has great information on it for all sorts of stuff. http://www.abta.org/Tumor_And_Treatment_Info/12 (American Brain Tumor Association). You can give them a call as well. My experience with them has always been positive. They are always so nice.

Glad to hear that "today" your mom agreed to go to the neuropsych.

Sandy,

I agree with what Debbie has said.

It sounds like your mom already had a difficult personality. Being in control is often a mind condition more than a choice. It can be moderated by those with sound brains but can be overbearing when the brain begins to fail.

If she is/was a perfectionist ( as it sounds like she is/was) her frustrations are becoming all the more prominent as she has lost some of those abilities to achieve perfection.

I have been a perfectionist for most of my life. Sometime, in my mid adult life, I came to realize how negative my perfectionism was on others around me. I made some choices to try to let go of some of my perfectionism. Now that I have serious cognitive disabilities, there is no way I could maintain being a perfectionist. It is very frustrating but fortunately, my prior change has prepared me to let go further.

Your mom may still feel like she has to be the over-achieving, perfectionist mom with her children as this was her life with them/you. The sooner she realizes the stress she is causing the better. Life will only get tougher. She may have lost some of the judgment making parts of her brain. It is not uncommon for a brain injury/disease survivor to lose specific mental skills.

If she will go and be assessed by a neuropsychologist, do everything to help her get this assessment. If you have recorded her outbursts and other problems, the neuropsych can discuss them with her.

A good neuropsych assessment can pinpoint the "fact" that her brain is not processing or responding to stress or confrontation properly. If the neuropsych can explain this to her understanding, she may be able to accept that she has this disability.

You would then need to determine how to work with her when she misbehaves. A code word can be agreed on that helps her realize that she is starting into this prohibited behavior. One family I know of uses "popcorn." I think it is great as when you pop pop-corn, the kernels pop at their own random timing. The only way to stop them is to remove the heat.

This is like the popping of your mom's responses. The only way to stop it is to drop the subject, remove yourselves from the environment, or what ever is the trigger of the outburst.

I have learned to get up and walk away from the conversation, if I can. My wife can tell when my frustration limit is being challenged and will distract me or lead me away.

When a neuropsych assessment diagnosed this propensity, I was able to better accept it as a problem that "I" had to deal with. Before, I considered it to be a problem for those around me to deal with.

If she comes to live with you, this will only get worse. "She" will need to make some major behavioral choices so as to not disrupt your home life. Assisted living facilities can often handle these issues as they are common with one of the stages in Alzheimer's Disease. You can not do anything without her serious cooperation and change.

If she can find a place to live that has transportation options that do not depend on you, that would be beneficial. She will likely feel more independent relying on paid staff than being dependent on her daughter who she feels is subordinate to her. Subordinating herself to her children is a big and difficult step.

btw, Have you checked into Senior services in her area? They often have social workers who are highly skilled in these areas.

My best to you as you struggle with this situation.

Trish, thanks! I was just about to call you back. Were your ears ringing?

LOL. I just got up from nap. Give me a call. I have a few good hours of being alert.:D

I'll give you a few minutes to wake up. haha