Dr. Follow Ups

Hello.....we are seeing my mom's radiation oncologist this week and I plan on asking him to order an MRI before the 6 months suggested by the previous dr. we saw.  If he says no, then I'll ask the oncologist. It's so hard to just up and change dr's when what they've done so far has worked! I hope we don't have to change dr's and I hope that my mom can enjoy this "stable" period to it's fullest.

 On another note, I need some help finding activities to help my mom pass the time. She spent the entire winter talking about working in the yard when spring came around. Well, it's hear and everytime I ask her if she wants to plant flowers, or do some work in the yard her response is "I'm not ready for that yet". She use to enjoy watching shows on the food network, now she says "I'm not interested". I bought her a book on tape, again "I'm not ready for that". We went to the craft store...still "not ready for that". I don't know what to do and I am losing patience. I understand her vision is not the same and her comprehension continues to worsen but I don't know what to do to help her pass the time during the day. Does anyone have any suggestions??? Currently the most I can get her to do is take short walks and sit outside if the weather is warm enough. It wouldn't be that big of a problem but she is constantly telling me she's bored and basically asking me to entertain her.....argh....help!!!!!

 thanks all!

-h-

Hi Holly,

I'm not sure how to spark your Moms interest. We live in the U.P. and I said as soon as it warms up I'm walking the board walk and my husband reminds me of that alot. When you have been laid up for a long time its hard to get motivated so I know if she starts to do an activity as part of a schedule that might help. But I think she will need you to really help her along, do you think she might be depressed ?  I feel bad for you it sounds like you are working so hard for your Mom and that's not easy. Our oldest is 26 and I cant even imagine if it were her in that spot. We have a daughter that lives in Ann Arbor and she felt so guilty leaving to go back after spending 3 months here at home helping with her Dad.

Do you belong to a church? Sometimes there are groups that she could join there. Well I don't think I helped too much, I do want you to know you aren't alone and if I think of any thing I will drop you a line.

Take care of yourself and try to take time for yourself,

Dawn:)

Hello Hooly,

I too, cannot help much other than to let you know that I am in there with you. I've said before that our moms sound similar. I guess we caregivers take for granted how much "brain power" it takes for the simple tasks that our loved ones once enjoyed and now just cannot pull from all the parts of the brain to continue. Even processing conversation and voicing an opinion in a lively conversation is difficult for my mom. I was reminded of this when we were all out for Mother's Day breakfast today.

My mom had always enjoyed reading and playing Hearts on the computer... 2 activities that take very little energy. Yet, for a period of time following radiation until about13 months after surgery she could do neither... just could not concentrate enough for them to make sense and she seemed very restless and dissatisfied as well. Because of loss of sensation on her affected side, she had to relearn how to use the computer with 1 hand. When she did resume reading, it was mostly the Bible. Both of these activities again occupy a portion of each day. Now her days bore me to tears, but having an unchanging routine seems to be comforting for her. Outside of periodically suggesting we try a new restaraunt (and this is monumental) or accepting a drive past some place of significance, each day is very much like the last and she journals every little detail. Accepting this has given me a measure of peace as well.

I remember suggesting during a neurology appointment that maybe an antidepressant would help. Mom shot back, "I am not depressed, I am happy," when I was seeing no recognizable outward demonstration of happiness. But I think she meant it. I just think now, happiness (acceptance? peace?) looks different.

Hang in There, Louise

As a patient of GBM I can relate to your mother's indifference toward what she used to like, but I also feel sorry for you in your frustration to help. I wish I had suggestions for you to occupy her time, but I have the same problem. I'm 53, used to work full time as a self employed salesperson, took care of my elderly mother who lives with me, multiple pets, did all housework, laundry, shopping, yardwork, etc. Now my vision is impaired so I can't drive, can't work, etc. etc. But I also find I can't handle too much stimulation even though I have few deficits from the surgery and radiation. Conversations are hard (I've learned to text message instead of talk on the phone), groups of people make me agitated after awhile==even my family! I start to stutter and mix up words. I bought a camera hoping to pick up a new hobby--can't see well enough, not interested. I, too, longed for spring to work in the yard--I do when the weather is good (rare here in New England) but it's not as enjoyable as I'd hoped. Feels more like a chore than a hobby. Tried journaling--got bored. You get the picture. Luckily, I have finally mostly come to terms with my disability and THE NEW ME. I say "mostly" because there are many days when I'm bored. I remind myself that life was often boring before I got GBM. Anyway, could be your mother is immersed in her own thoughts. I've always been an insular person but am much more so now. And maybe she's still feeling guilty about not being the person she was before brain cancer but can't (or doesn't want to) admit it out loud. I've read your previous posts but forgot how old she is and what she did before GBM.

I didn't mean to write so much about myself, but since I don't know your mother I thought I'd chronicle how I feel and hope there are similarities you can latch onto that might help with her psyche. A way to pass the time will come when she accepts who she is and what she's capable of.

Good luck, Mary dx 9/2007