Any men out there caring for wives with an AN?

[spgreenfield]

I am fearful this journey is going to be more than my husband can handle.  I'm reading lots of posts from men whose wives cared for them, but women are natural caregivers....

My husband is the type that flies through recovery on all accounts.  He had total knee replacement and was walking like normal only a month or two later.  He severed his achilles tendon, had surgery to re-attach it and was recovered far quicker than anyone (including medical ppl) ever thought possible.  He's a typical executive and takes complete control over the situation.  For me it's impossible to see him handling anything close to what I've read under complications.  I feel I disappoint him all the time withjust my low energy levels and forgetfulness.....any suggestions out there?  Going to schedule surgery for early January 2012 - getting though the holidays without wanting to worry about recovery!

Help?

Pam

[Jim Scott]

Hi, Pam ~

Welcome.

Your post was poignant and resonated with me because, like your husband, I'm another one of those impatient, 'fast recovery' types.  I was driving again within 2 weeks (10 days, actually) of the 9-hour operation to de-bulk my 4.5 cm AN to prepare it for radiation (3 months later).  I probably pushed myself a bit more than was optimal but my neurosurgeon was duly impressed with my rapid recovery and I suffered no ill effects.  My wife is a 'natural caregiver' (middle child of eight) but I pushed away her sincere attempts to 'nurse' me post-surgery because I refused to be a 'victim' and wanted very much to resume my normal life, not be a 'patient' needing care.  This caused some friction between my wife and I because, I was, in her words, "a grouch" but once I regained normalcy, my usual, sanguine disposition re-surfaced.  That was five years ago, and we're still married. 

Because every AN surgery patient is unique, I can't accurately predict what your recovery will be like.  If no complications arise post-op, as was my experience, you'll be discharged from the hospital in about 5 days and will need, perhaps, another week or so to rest and get past the fatigue this (major) surgery inevitably produces.  Then, it's a slow but steady recovery.  You may need a bit of physical therapy to help you overcome balance deficits and you may not be up to anything terribly strenuous, such as gym workouts, for some time (months). 

I believe that in your situation (hyper-energetic, impatient husband) your best course is to do all you can to prepare him.  Ask your doctor to talk to him and explain that this is serious surgery, easily more serious than knee replacement and often with a longer recovery period.  I strongly suggest you introduce him to these forums or print off any posts that you think may be helpful in 'educating' your spouse in the realities of AN surgery recovery.  Make it as clear as you can that this is brain surgery and that, while you have always admired his recuperative powers, you are a different person and will probably need a bit more time to heal and regain full function.  Consider, if practical, having a friend or relative help out the first few weeks you're home or consider hiring temporary domestic help, if that is financially feasible.  The goal is to make his expectations of your recovery as realistic as possible.  I understand that an impatient person may have some difficulty helping you through what may seem, to your husband, a protracted recovery but if he is at all sensitive to the seriousness of the surgery and that you are trying to do the best you can as you recover, it may help.

I'm sure others will have additional thoughts and suggestions to offer but I hope mine will be of some use.  Please post as often as feel it necessary.  We're here to support and encourage folks just like you and we, collectively, we have a wealth of information to offer.  Just ask.     

Jim         

[spgreenfield]

Jim,

Your reply gives me great hope!  My tumor is only just above 2.3 cm - not the size that yours was.....I'm curious - who was it that suggested you do it "this" way?  I'm waiting to hear back from Stanford U. and House Clinic on their opinions.  I am most terrified of facial issues....the hearing I can psych myself up to handle and balance, well, I'm used to that dizzy feeling now anyway but would really like to have feeling back in my mouth.  I think my teeth would appreciate having help from the 'other' side anyway....but currently I dare not attempt it - I end up chewing on my tongue or cheek too easily!

I've been exploring the forum for helpful tidbits, but haven't really seen much except regarding the time awaiting surgery reports and how anxious the care givers are.  I have come to the conclusion that going to my girlfriend's home and staying for a week til I'm beginning to get my feet under me.  Unfortunately we're talking flying there - and my hubby is a great one for money concerns!

Pam

Pam

[CHD63]

Pam .....

Facing this impending surgery is probably far more stressful than anything your husband has ever encountered.  Please know that this forum exists to support both of you, but especially you as you go through these days of uncertainty.

In addition to my two AN surgeries, I have had 2 other major surgeries and I can tell you the anxiety level for the AN surgeries far exceeded the other ones.  That being said, the recovery from brain surgery is far different (not necessarily worse but very different) than any other type so I hope your husband can cut you some slack on your anxiety level.

OK, in reality, caregivers have many different reactions to illnesses of their significant others.  To maintain their own emotional stability, some people toss off the seriousness of what is happening.  I hope you can understand the differences between your anxiety and his.

As for cost of flying, if you are near an airport where Southwest comes, they run very good deals and no charge for changes.  We used frequent flyer points on United when we flew to CA.

Many thoughts and prayers during these stressful days.

Clarice

[Alan Goldberg]

Hi Pam  -

My wife had surgery two years ago and clearly the initial diagnosis was a shock for both of us.  It's important that your husband is part of the process that you're going through and be a have an opportunity to speak with the doctors about what to expect. 

If there is an ANA support group in your area I'd suggest going to a meeting. You'll find other couples, just like you, who can give him (and you) a better understanding of the adventure before you.  I've learned more from others who have been through this experience and it has helped me to better understand what my wife is feeling.

You mention of your concern that you are disappointing him.  My wife had surgery two years ago, and while now wearing a BAHA to provide hearing support and having some headaches that didn't exist before - she's the same person she was before (in fact she's stronger feeling that she can do anything now!)  This isn't about disappointment - its about partnership and the more he is involved and understands what you're experiencing, the more it becomes about strengthening the relationship.

Best of luck and happy holidays.

Alan

[Jim Scott]

Jim,

Your reply gives me great hope!  My tumor is only just above 2.3 cm - not the size that yours was.....I'm curious - who was it that suggested you do it "this" way?

Pam ~

Please forgive my tardy reply.  I must have overlooked your question when I first read your response to my post.

To be concise:  When the neurosurgon I chose read my MRI scan/report he met me the next day and presented his proposed plan to address my large AN.  Because I had told him over the phone that avoiding facial paralysis was a priority, he elected to use the debulking approach followed by radiation (FSR) with the ultimate goal of destroying the tumor while avoiding damage to the facial nerve.  Long story short: it all worked, splendidly.   

Jim