Honouring your parents

[Hija27]

Hi forum users and guests
I needed to express how I am feeling and hope that if anything, merely expressing this will be therapeutic.
My mom is 56 years old and was diagnosed with AN (no idea of the details) in 2008. She had symptoms - mainly hearing loss, balance problems and the start of facial numbness and saw her ENT (an old friend) a few times before the AN was diagnosed. She had the radiation - therapy treatment (again sketchy on details) in May 2008. She has been experiencing extensive problems - facial numbness, loss of taste, no feeling in her mouth which has lead to dental issues, hearing loss on her AN side, reduced vision in her eye on AN side - all of the things I have been reading about online and on this website. However, she also seems to be depressed (not exactly sure but think so)-very reclusive, maybe due to hearing issues-crowds and noise give her major headaches-and is just all round not the same person that she was pre-AN. The whole situation is complicated by the fact that a about 15  months pre-diagnosis, her husband (my dad) passed away very suddenly from a heart attack.So she has been dealing with alot.
I have tried to encourage her to join a forum like this but she wasnt keen. She does not have much support in her life and we live outside of the USA where I have not been able to find a support group (though I doubt she would get involved). She has had almost no psychotherapy since my dad's death and the AN treatment.
She has now had a MRI (3 years post radiotherapy) and the result is that the AN hasnt shrunk (? I get info second hand and dont have much detail). She still experiences major effects from it. She is convinced that her Neurosurgeon is just going to give her another script for Neuronton and send her on her way.
I am battling to accept that this is the best thing that can be done because of what I have read online about people living normal lives post AN without all the pain and difficulty that she accepts as daily life. I feel like my hands are tied because she is an adult and has to make her own choices.
Her AN (and my dad's death) has torn our family apart and I just dont know what to do at this point.
I have found the forum really informative, thanks to all who make it happen.

[ppearl214]

Hi Hija and welcome. Where are you located outside the USA?

Expressing is ALWAYS therapeutic and I commend you for reaching out here to help, possibly, understand what your Mom is enduring. I am sorry to read about your dad.

Please know the goal of radiation treatment on AN's is not to shrink AN's, although it can happen (some, like myself, have seen shrinkage, some have not. The goal is to stop further growth from its current size.)  Since your mom is approx 3 yrs post radiation, there may be some enhanced issues, such as you note, that may or may not occur.  Sometimes, drs prescribe anti-inflammatories (either over the counter or prescription steroids - short term use) to help get a handle on these issues.  I can report that, even though I am 5 years post radiation, I have also had issues crop up from time to time this far past radation and have kept my drs updated in case they need to jump in to help.

As a caregiver too for my dad, I can well understand when we see our loved ones endure issues that we tend to feel helpless. We try to encourage, we try to research and share the info, we try so much to do all that we can to be there in all aspects to show our love and support.  In my case, stubborness is shown my way and regardless of how stubborn he can be, I try to share or comfort or share info/advise.... and its a difficult situation when you feel you are doing right for them and they can push away.  I just keep telling my dad how much I love him and can only hope that what I share helps.   

As an AN'er, many learn to accept the "new normal".  Issues that may continue to plague us over time become the "new norm" and we try to learn to adjust to it as now part of our daily lives.  Some can learn to deal with it and some don't.  But, with continued support with family and friends... and here on the forums, we try to hang tough as best as we can.

Please let your mom know that we are here to help if she wants it... and even if she doesn't.  Your participation here, as a caregiver, is so very important as well. The ANA does have info on their home page for caregivers and hope that you take the opportunity to read some of the info.  We look out for caregivers as well as you all are SO very important in our AN journeys.

Hang tough. Sorry this is long-winded. I had coffee this am

Again, welcome.
Phyl

[Jim Scott]

Hello Hija.  Welcome to the ANA discussion forums.  I'm glad you decided to register and post your concerns about your mother.

Although you may be 'sketchy' on the AN-related details, you seem to have a good understanding of your mother's problems.  As you know, the loss of a spouse is one of the most devastating life events a person can face and it's no wonder that was a blow for your mother (and you, no doubt).  Following that with an AN diagnosis, surgery and continuing post-op complications that affect her quality of life has to be daunting for your mother.  I'm not a doctor and won't pretend to diagnose the state of mind of a person I've never met but I can understand why your mother might slip into depression after all these set-backs and losses in her life.  That you are obviously concerned about this speaks well of you and your love for your mother.  However, your frustration is also evident in your post - and that is quite understandable.  As you realize, your mother needs to 'socialize' and be able to vent her own frustrations, which is usually therapeutic.   In fact, we encourage AN patients struggling with problems to do just that.  As I usually put it: if not here, where?  Unfortunately, as you noted in your heart-felt post, your mother cannot be 'forced' to do anything she doesn't want to do.  All you can do is let her know that you care about her and her quality of life.  Encourage her to register and post a message here.  We're all AN patients and we empathize with those who are struggling with post-op issues.  Tell her we're waiting to see her first post.  We don't judge, criticize or second guess anyone.  We know how she feels.  Some of our members are going through the same struggles that she is.  Besides posting here, encourage her to take 'baby steps' toward normalcy, whenever possible.  Look for the improvements in her condition, no matter how tiny.  They are markers on the road to wellness.  We sympathize with your angst and I want you to know that you and your mother will be in my thoughts and prayers.  Stay strong, Hija.

Jim     

P.S. I know this is long-winded but I've always been this way.