Newly Diagnosed - Preparing to be a caregiver

[karenella]

Hello All,

What information would it be helpful to know about being a caregiver?

What preparations should I be making?

In hind sight what do you wish you knew?

Are there things that would have gone differently if you knew to do them in a particular order, maybe with regard to insurance matters etc.?

Thought on using a website to keep people informed?

Any help would be appreciated!

Thank you,
Karen

[karenella]

More info about diagnosis AN 17mmx14mmx11mm at CPA
Symptoms: occasional vertigo, and "shifting vision"

We are so thankful to have found this now when symptoms could have easily been dismissed as something more simple.

[pjb]

I believe on this site there is a special section for caregivers with all different questions along with answers hope that will help ...


Best Wishes,

[karenella]

Hi pbj,

Thank you I thought that is were I was. in some old posts I found a few links to resources, but they were no longer working. I will have to search around some more.

Best,
Karen

[ppearl214]

Hi Karen and welcome.

Yes, you are in the right place for the "Caregivers" of those with AN's.  As a former caregiver in a different situation, I can well understand and relate to what a loved one feels when someone in their life is handed a very difficult medical struggle.  It's an amazing feat of mental will and strength and courage to be a caregiver and I commend all those that endure those shoes.

Again, welcome.
Phyl

[karenella]

Update: My husband had his hearing test and his hearing is good, no significant difference between the AN and on-AN side. His is not experiencing the dizziness that he was, and for the most part life is "normal".

As for anyone being diagnosed this has been a big shock. I am especially having trouble with the urgency of the diagnosis (being told to cancel a business trip and be seen first thing when office opens Monday morning) to this much slower pace of making a huge decision and imagining the impacts to our lives.

Any advice would be helpful, particularly things you learned from experience as I asked in my original post. I need to be able to DO something!!

You all are amazing being willing to share what your experiences have been. Thank you, Karen

[OTO]

When I had my surgery and came home, I stayed with my parents (I'm single).   For me, the recovery wasn't too bad.  I appreciated that my folks kept me motivated... Get off the couch and go for your walk!  Stop watching TV and do you exercises!   

[Alan Goldberg]

Hi Karen -

Sorry for the delay in answering, my wife had surgery 3 years ago and was back at work 6 months after surgery.  There were many things I wish we knew before the surgery

1.  I wish I knew about ANA and all of the support form this site and the association.  You're here already - great!

2. Get a second opinion.  there are many excellent doctors and hospitals with amazing experience and resources - you'll learn a lot.

3. Find good vestibular therapy in your community.  It's not traditional physical therapy and a good vestibular therapist makes an enormous difference during recovery.

4. Participate in an ANA support group in your community and talk to one of the ANA "willing to talk" members - some are patients, some are caregivers - all are here to help!

5. Don't panic - while your husband will need your support - you also need support.  Don't ignore your own feelings.

Keep us up with what's happening - you'll be amazed by the suggestions and resources.

Good luck -

Alan

[wwarr]

Hi Karen,

Welcome to the forum!  I'm so glad you have found this wonderful line of support here.  Please know that we understand what you are going through.  It is a big shock to receive the diagnosis!  I remember for days being in disbelief! What you and your husband are feeling is normal.  As an AN patient and also a current caregiver myself, I fully understand what it is like to get devastating news and have to cope with it.  You reach within yourself for a courage and strength to cope and be able to deal with it.  The good news is that there are ways to treat an acoustic neuroma.  My advice to you would be to get in contact with the ANA association and they can send you literature to read up on.  You can come here for emotional support and hear other AN patients experiences as well as caregivers.  Then I would research, research and research.  Don't be afraid to get second opinions if options don't feel right to you both.   Knowlege is empowering.  I know what you are about to embark on seems overwhelming, but just take it one day at a time.  When I finally made a decision, I put it in Gods hands and walked with faith knowing I had done all of my part.  Again, research right now and find the right Dr. and action for your husband.  Go with your "gut" feeling.  Depending on the size of his AN, sometimes watching and waiting is an answer too.   I wish you the best and will keep you both in my prayers.
There is hope!
Wendy