Author Topic: OVERWHELMED  (Read 5589 times)

TNMTMAMA

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OVERWHELMED
« on: May 28, 2015, 08:49:07 am »
Hubby was diagnosed in January with 3cm AN. He chose to delay surgery until late June. I was actually relieved to hear the diagnosis because for the last 5 years, I thought that either he had dementia OR that I was losing MY mind. I find his "logic" and "emotion" are sometimes absent and I feel so alone. We've been married over 40 years, always handling the tough times with humor, and this struggle is no different. We laugh A LOT, however, I can no longer depend upon him to make decisions. He seems overwhelmed, sometimes staring at me with a blank look OR questioning my obvious frustration. I try to keep calm and explain to him WHY I'm so busy with details, but there is no response. I've read some of the caregiver posts which were very helpful, but I didn't find a post on this subject. Have any of you caregivers experienced this? I find myself doing stupid things, like losing items, making mistakes on business matters, etc. I swear sometimes I think that I'm the one with the tumor. ::)

CHD63

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Re: OVERWHELMED
« Reply #1 on: May 28, 2015, 01:35:49 pm »
Hi TNMTMAMA and welcome to this forum .....

Being diagnosed with an acoustic neuroma, especially a rather large one at 3cm, creates considerable stress on the emotions.  That being said, it is vitally important for both the patient and caregiver to create a personal environment as stress-free as possible.  Some of us have accomplished this through meditation, yoga, prayer, counseling, etc.  ..... whatever works for you and your husband is what you should pursue.

When I heard my original diagnosis, my brain just sort of "shut off" until after my first surgery.  I walked around in a haze, going through the motions of what I needed to do but not really dealing with reality.

Many thoughts and prayers while you await your husband's surgery date ..... and please ask any more specific questions you may have.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

arizonajack

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Re: OVERWHELMED
« Reply #2 on: May 28, 2015, 08:56:18 pm »
He seems overwhelmed, sometimes staring at me with a blank look

Have you considered the possibility that he's lost quit a bit of his hearing on the AN side, possibly some in the good ear, too?

That could go some in explaining the blank look.

That size tumor and his age is almost a given that there is hearing loss.

I was diagnosed when I was 65 with a small tumor (read my history at the link below) yet it still rendered me deaf on the AN side along with partial hearing loss on the good side.

I've worn hearing aids for 3 years. Before that my friends would talk to me and I would just nod like I knew what they were saying. Once I got diagnosed and revealed the hearing loss we all had a good laugh over it and moved on.

I suggest getting him to an audiologist for a hearing test.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

TNMTMAMA

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Re: OVERWHELMED
« Reply #3 on: May 29, 2015, 03:41:40 am »
Thank you for the responses and encouragement. To: Arizonajack, he has lost 60% in one ear. The other side is good. We understand that he will lose the one side completely. Looking back, I started becoming a caregiver about 5 years ago...just didn't understand why. The "blank looks" are a "lack of understanding." (Oh, sometimes he uses "selective hearing" because he is a guy! Ha!) CHD63, your description saying that your brain "shut off" explains what I am seeing. Example: When we are in a large store, he will often freeze, as there are too many sensory issues hitting him at once. I have to gently take his hand & guide him out of the way.  If I ask too many questions at one time, I see him shut down. SO...I'm learning to keep all the technicalities to myself so he will remain calm. Finding a safe place to vent without making him feel guilty is my goal. No support groups in my rural area. I'm so happy to have found this site where people truly understand.

arizonajack

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Re: OVERWHELMED
« Reply #4 on: May 29, 2015, 10:54:12 am »
There's also the possibility that the large AN is putting pressure on areas of the brain that might account for his behavior.

Have you look at his MRI images.

If you haven't, then look at the following image of a 2.8 cm AN. It's pretty big and takes up a lot of space in the skull where there isn't a lot of space available.

http://www.skh.org.tw/x_ray/teaching/head/imageshead/12/12d.jpg

Well, June is right around the corner and I hope he will get relief with the surgery.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Tod

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Re: OVERWHELMED
« Reply #5 on: May 29, 2015, 11:24:08 am »
Not knowing your husband or his past, I would also mention that in my case focus sometimes becomes hypercritical  to getting through the day. I've always been a freakishly intense person that most people don't want to spend a lot of time with (don't get me wrong, I am quite wonderful, but a little bit goes a very long way ;D ). That intensity is very worse these days because I am now my wife's full-time caregiver and maintaining a very demanding full-time job (but sacrificing some of the externalities that benefit a career). I find myself constantly asking/reminding her not to ask me to do anything else until I finish the task at hand. I far too frequently ask her to repeat herself because I get so internally focused, I'm not paying enough attention to track everything she says, even though I hear it. I'm just not listening well enough because there is so much to manage.

None of this completely foreign to life before surgery, it is just noticeably worse now.

It also sometimes affects my ability to make certain kinds of decisions. There have been times when I have absolutely floundered, seemingly unable to make a very simple decision that sometimes brought me to the point of tears. I simply had to develop coping mechanisms to handle it and get past the difficulty. Mostly these involved pulling back and reminding myself of the things I do know.

I think all of this is kind of a mix being a patient and a caregiver. It may be too mixed to be of any help to you other than to say, "Yeah, you're not alone...neither of you are."

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

TNMTMAMA

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Re: OVERWHELMED
« Reply #6 on: June 05, 2015, 09:05:10 am »
All of your advice has been VERY HELPFUL! Tod, I can't imagine being the patient AND caregiver. Hang in there. I can relate to putting a career on hold. I am an independent author who has been having a lot of success over the last 5 years. Just as I am hitting my stride, Hubby is diagnosed. I fulfilled 2 promised commitments a few months ago, then brought everything to a screeching halt. My readers and fellow authors know what is happening & are very understanding. But...cute story...I released my last book in January just as Hubby was diagnosed. YESTERDAY, out of the blue, Hubby asked why I did not have any book signings for the release? I smiled, "Because you are my top priority." He said, "OH, Okay," and went on about his business...la, la la...Smile! Without y'alls help, that would have upset me, but thanks to you...I'm learning to say NO. Instead of being frustrated, I have a better understanding of what is happening with him. We laugh A LOT!

ARIZONAJACK, yes, I saw the MRI & was blown away. The tumor already has his spinal cord out of alignment. They can't understand why he is still upright. I watched him walk recently and noticed that his feet are turned out to compensate. He is 6'4" and wears a size 14 shoe.

I have peace of mind about his balance now...but much apprehension about him coming home. I hear that he will most likely be very dizzy. If he starts to fall, there is NO WAY I can catch him. Right now...this is my biggest concern. Did any of you have an issue with falling when you came home? Did you need a walker or assistance to walk?

 


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