Author Topic: Cycle of grief  (Read 9153 times)

burnout

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Cycle of grief
« on: April 04, 2010, 05:37:44 pm »
My spouse has suffered through three brain surgeries and a cycle of Cyber Knife treatment for a 5.5 cm AN tumor in the span of the past two years. The reality of our life is that we are both grieving many losses. His tumor was diagnosed within a few months of his retirement, an especially bitter pill to swallow.

We are both grieving the loss of dreams, companionship, money, control, independence, intimacy, conversation, and any semblance of a normal life. Grieving starts long before a person passes away. It is like dying by inches. He isolates himself in his office 24/7. He is understandably depressed but refuses to seek any help for his depression. My husband often says and I agree that people just want to hear happy talk. Happy talk does not address the very real and serious issues of isolation, anger, and fear. Being told to just simply be a positive thinker is an attempt to minimize the grief and burdens of a very difficult life situation, but makes life easier for everyone else.

I cope by being NUMB, not a fun way to live. I am open to any feedback and ideas as to how others cope who are going through the same thing. Any ideas how to get my husband to join the living again?  :'(

sgerrard

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Re: Cycle of grief
« Reply #1 on: April 04, 2010, 05:52:32 pm »
My first notion is to get him on the forum. Misery loves company. It is often difficult to find solace in the world of "normal" people, but those who have been through similar things are much more understanding. It is really the main reason we are here.

It is possible to establish a new life filled mostly with things you like. It means giving up some things you used to like that are no longer possible or don't work out well anymore. There is opportunity to add some new things you didn't do before, but may find you like doing now. I think many cope by focusing not on the things they can no longer do and miss, but on the things they can do and still enjoy.

Watch out for Stoneaxe, he will tell your husband to take up paddle-boarding, which will result in him traipsing around the country in search of the perfect wave. Mary BK found her self stuck using a cane to walk, and unable to paint. She now has a little business going selling designer canes on E-Bay. Things are possible.

Welcome to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Rivergirl

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Re: Cycle of grief
« Reply #2 on: April 04, 2010, 05:54:04 pm »
Wow, what a tough situation. It is never easy to have someone tell you that you have something wrong with you, and to retire just ot have 3 surgeries and gamma knife is alot to handle.  I would say if the relationship is worth saving then just be persistant in small increments work away at his depression, trick him into wanting to live again, try not to get pulled down with him then.  Make sure you stay healthy so you can be ready to start enjoying your retirement when he comes out of it.  Changes are best when they come slowly so keep trying.  Hoping things get better for you guys.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Kaybo

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Re: Cycle of grief
« Reply #3 on: April 04, 2010, 08:32:19 pm »
Burnout~
This sounds like an awful situation and I am sorry that it has happened.  I don't have an automatic "fix" for how to get your husband "jump started" back but I agree with Steve that he (y'all) need to find SOMETHING that will get him going again.  I definitely had to readjust to the "new" me...but I have a GREAT life.  Is it different (some would say VASTLY) than what I thought it would be?  YES...but good none the less.  I would think that retirement would allow for a "natural" break to try new things & interests.  Just as I thought that my life would be going one way (I had my surgery when i was 25 & only married a year), I learned that there is a whole world full of "other" interests out there - it is all in how YOU (or your hubby) CHOOSE to view it.  I'm not saying that it is sunshine & rainbows all the time...nor do you have to portray that (this Forum is great for venting!), but if you want to make your life worth living, you have to embrace it however you can!!   :D

We are all rooting for y'all and want to help however we can!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

nancyann

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Re: Cycle of grief
« Reply #4 on: April 04, 2010, 09:47:00 pm »
You know,  I went through so much turmoil dealing with right sided facial paralysis - & after 4 years,  I am in the light after that dark tunnel.
Your dreams are still viable, the only change is ADDING his changes, not subtracting due to his changes.  Does that make sense ?
I am a more understanding person b/c of what I have been through.  My life has changed for the better - profound life changes do that to you, there are limitations,  but the feeling inside me - the love & compassion for the 'underdogs' has widened my universe so much.  Your husband has obviously been through much more than I have,  it may take more time for him to get over the anger of his situation.  He is only 2 years out, + going through more surgeries than most of us had.  I am where I am after almost 4 years, twice as long as your husband.
I feel I have become a better person, & to tell you the truth, after all is said & done,  I wouldn't change a thing.
Oh yeah,  there are definitely more challenges,  but it has made me so much stronger.
Life will go on,  keep moving forward, don't look back at what you 'expected' life would be like because life can be better than you ever thought.
My suggestion to you is to un- numb yourself - cry, scream, whatever you feel - let your husband see your true feelings.  Then hug him like you have never hugged him before,  tell him you love him & will always stand next to him & you both will get through this.
Believe in your dreams, they may have changed a bit but they are still there.  & as you begin to live the dreams,  you may find they are better than you ever thought.
Your husband may really surprise you.  He needs more time.  Be patient,  keep a peaceful heart ...

Always good thoughts,  Nancy
« Last Edit: April 04, 2010, 10:07:48 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

GM

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Re: Cycle of grief
« Reply #5 on: April 05, 2010, 07:22:33 am »
When I found out about my AN I too was at a huge crossroads in my life.  I was retiring from the military in a few short years, I was going through a divorce, and many friends had wondered away as happens sometimes in a divorce.  I literally had no one to talk about this with.  My parents were both deceased, and my only sibling had his own life challenges that he was going through with a handicapped son.  Men don’t really talk about things, we tend to “problem / solve” a lot…I know I do.  Your husband might also be dealing with this.  

It was killing me to have all of this inside with no one to talk to.  I definitely didn’t want to approach the military…I was frightened enough that my AN might make me retire early.  I definitely didn’t want to tell them I was now stressed!  So I started to write (well type) it down.  I started an electronic journal.  Everything went in there…concerns, fears, rage, dreams, and decisions about my AN, my divorce and life.  In my journal is where I decided how to treat my AN.  Also through my journaling, I decided to find myself again, get back into things I loved.  I also got involved in a local church.  It was great timing, they were just flooded out, and I helped them relocate and set-up; it was great.

My journal is long gone…it fell victim to a hard drive crash.  The money to try and recover my journal just didn’t add up.  It helped me get through a very tough time and had served its purpose.  I’d highly recommend not only journaling to your husband (he can password protect it by the way)  I’d also recommend trying to get him involved in something…church, local animal humane society, VA hospital…all need volunteers.  It’s amazing what this can do.

GM

« Last Edit: April 05, 2010, 07:25:11 am by GM »
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Jim Scott

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Re: Cycle of grief
« Reply #6 on: April 07, 2010, 01:50:03 pm »
'Burnout' ~

You and your husband are in a tough situation and you have the empathy of many, including me.  Unfortunately, I doubt that any of us have a simple, easy answer to this dilemma. 

Your husband has plenty of AN-related burdens to bear, as do you, and his depression - and the angst it's causing you - is not difficult to understand.  Change is hard for everyone, it gets harder as we age (I'm 67) and harder yet when it's life-altering physical issues that force the change and cut us off from what we thought were reasonable goals for our immediate future.  As my fellow moderator, Steve, suggested, visiting this website/forums and venting can be cathartic for some.  I urge you to try to steer your husband here for that purpose, if possible.  His opinion that 'people' just want to hear 'happy talk' is correct.  That subject has been discussed at length in this forum.  My opinion is that everyone has their own, distinct set of cares and worries and really don't want to hear that much about other people's problems, especially one who is depressed and negative all the time.  Many folks are also self-centered and care only about their problems and don't have much tolerance for hearing about other people's problems.  That's just the harsh reality of human existence.  Of course, there are exceptions but they are just that: exceptions.   

One of the core issues in fighting depression - or helping a loved one to want to fight it - is to acknowledge the losses, the unfairness of it and the fact that some things are not going to be the way we wanted them to be, no matter what we do.  This is not simply resignation but a realistic appraisal of the none-too-pleasant situation at hand, necessary before a strategy for recovering from the depression can be formulated.  Once the reality has been assessed and faced squarely, not with unending anger and pointless pouting but with a cold, hard eye that says: this is the way it is - what am I going to do with it?  - the journey back from depression has a chance to begin. 

There are a host of stratagems available, many online, and I urge you to pursue them.  Because your husband shuns professional counseling he won't be prescribed anti-depression medications unless his doctor sees him, recognizes his depression (a clinical diagnosis) and offers to write a prescription for anti-depression medications, which is unlikely as the patient often needs to be monitored and the medication/dose adjusted for the best results. That being the case -and dealing with the situation you have, not just wishing it were different - you may want to consider helping your husband to focus on something other than his losses and discomfort.  Helping others is the best way to do that but you may want to consider starting by getting a dog - for yourself.  A convenient size (not too tiny or too large) and a dog that is 'good with people'.  The dog will help you by distracting from your husband's depressed state because it requires care and attention - and, as we know, dogs give back totally unconditional love.  Of course, the hope is that, even though your husband might grumpily reject the dog initially and complain about him/her, he'll 'come around' in time as the dog, as is their nature, offers him that unconditional love and, frankly, a distraction from his woes.

Of course this is simply a suggestion.  You may already own a dog and have not found that as a way to distract your husband.  I'm not a psychiatrist or a councilor, just a retired AN patient attempting to offer some solace for your loss and a suggestion or two that I hope might help your husband out of his depression.  In any case, welcome - and please visit the forum again.  We're an understanding bunch and want to help you in whatever way we can, even if only as a place to vent' your completely understandable frustrations.

Jim            
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

4cm in Pacific Northwest

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Re: Cycle of grief
« Reply #7 on: April 10, 2010, 03:06:26 pm »
Burnout,

Sometimes if I witness a very inspirational story it can give me the motivation to keep moving forward.

I saw this amazing movie about someone who does have some disabilities that are caused by a neurological physiological condition (not psychological) about Tourette’s syndrome (very different than what we have but still related to the brain.)

This well done © 2008 film is very inspirational and it even discusses the issues of support groups as has a support group scene. (Know that some support groups can be more positive and/or negative experience- than others.) His support group experience was not positive but know now that the real person depicted in the movie, Brad Cohen, now runs a very positive support group and even started a camp for kids
(Here is a CNN story about the camp)
http://www.cnn.com/2009/HEALTH/07/27/tourette.camp/index.html


The Film is called
Front of the class
http://www.imdb.com/title/tt1292594/
&
http://corporate.hallmark.com/Current-News/Hallmark-Hall-of-Fame-Acclaimed-Front-of-the-Class-Earns-Special-Encore-Presentation-Slot

Here is a trailer
http://www.youtube.com/watch?v=EuhyVHLlfXE

(Ironically I could not buy it on line and had to get it from a Hallmark store)
It is also available through Netflix.
http://www.netflix.com/WiMovie/Front_of_the_Class/70112508?strackid=4099e4cc7d2ba405_0_srl&strkid=462494609_0_0&trkid=438381


Perhaps if you sat down for an evening of entertainment and did not even talk about the Acoustic Neuroma but just about the story of Brad Cohen's life etc… it may get him to talk to you and open up.

Unlike so many movies today it is suitable for ALL audiences.

It is most apparent that his success had much to do with his family support network.

Here is his website that also talks about his book - which I really enjoyed.
http://www.frontoftheclassbook.com/
&
http://www.amazon.com/Front-Class-Tourette-Syndrome-Teacher/dp/B002LITRYE

I bought 6 copies of the DVD plus the book and donated to schools that  think would benefit from this story. I am also thinking he might even be a great Keynote speaker for a ANA symposium. I am going to talk to my local school district to see if they might bring him in to speak.

I hope you and he both take the time to see it. Better yet if you could get back to us and let us know if the film has any positive influence that opened up any good dialogue for your husband.

When I saw it - it was the lift I needed.

DHM :)

PS: One book that I once read, when I was working with at –risk teens and parents, who were in difficult situations is:

Burnout: The cost of Caring by Christina Maslcah
http://www.amazon.com/Burnout-Cost-Caring-Christina-Maslach/dp/1883536359

There may be better ones out there now but when I was training as an educator in the ‘80’s- that was THE book.  See if your local library has a copy
« Last Edit: April 10, 2010, 03:27:14 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!