Need Advice as a Caregiver

[drainedone]

I need advice on what to do with a spouse that has refused ALL help since his surgery for a 5.5 cm AN in February 2007. He flat out refused all physical therapy when released from the hospital. He is clearly depressed and will not take anti depressants, or seek out counseling or a support group.

We are 2,000 miles away from our support system because he was diagnosed shortly after moving to another state. As his caregiver spouse I am overwhelmed, fed up with his refusal to help himself, and my compassion is close to being exhausted as I contemplate divorce.   

Any ideas on how to reach someone who refuses help himself?

[oHIo]

That's a tough one, because as an adult, he has the right to refuse treatment as long as he is mentally competent.  Is his doctor aware of the situation? 

If it has been almost a year and a half, I'm not sure you are going to be able to suddenly convince him to get help.  Does he have residual effects from the AN surgery that still need to be addressed? (besides being depressed)

It sounds like whether he choses to get help or not, you need a break and someone to talk to.  Maybe a counselor or social worker would be able to help you locate resources for support or respite, if that is an issue. 

Know that we are here on this forum to offer you support.  It must be difficult to see someone you care about refuse help, while you become more overwhelmed and frustrated.

[leapyrtwins]

Like oHIo said, this is a tough one.  I agree with her advice.

I would ask his doctor for help and see if there is something that he can do for your husband.  Depression is a common problem with AN patients post op and if nothing else the doctor may be able to convince your husband that it's normal and can be treated.

Counseling for your husband, or counseling as a couple would be be very helpful, but if you can't get your husband to agree to it, counseling would still be beneficial for just you.

I also think that you should have a heart-to-heart discussion with your husband and tell him that you are at the end of your rope and contemplating divorce.  This may be just what he needs to realize that his depression is a serious problem, you are very concerned about it, and it's taking a toll on both of you.

In addition, you should try to find a local ANA support group in your area.  There is information on the main page of this website under "Support".

We are here to offer any advice and support we can.  If you can get your husband to visit the forum it might help him to see that he is not alone.  Currently there are over 3,000 of us here who can relate to being diagnosed with an AN.

Jan

[Kaybo]

I hate to bring this up, but on the flip side - that may be exactly what he wants you to do.  He may hate what he has become and feels that it is not fair to you that you have to live with someone like this but wants YOU to be the one to make the break.  Of course, we all know that it could be better if he would seek help.  However, I have always felt bad that I am not the person my hubby married and have just realized that we were truly blessed to have only been married a short while and were still getting used to one another.  I think it would be so much harder if you had lived with this person a lot longer and then this happened.  I would definitely discuss this whole situation with him and then point blank ask him if that is what he is trying to do -- IF you feel like he is stable enough for that discussion...
You will be in my prayers,

K

[Joef]

Kaybo makes a good point ! what does he really want ? 

He refused therapy - but what is he doing?... is he getting out ?? Working ?? or just veging out in bed ?? 5+cm is a monster ! it is not easy !! . any chance to get him on here?

[Kaybo]

Joef~
You're back!  You were missed!!   

K

[Joef]

Work has been nuts.... plus its fishing season!    going on vacation to FL in the morning ... so I still wont be around to much...

[Jim Scott]

Drainedone:

I'm so sorry to learn of your dilemma with your husband, post-op.

I agree that you cannot control his behavior, all you can do is react to it.  If your husband is truly depressed and refuses to take medications or seek counseling, you can only go yourself and see if it can provide a way for you to reach him.  You didn't mention if he had any post-op complications (facial paralysis, for instance) that might be motivating his depression.  That is crucial to understanding his ongoing state of melancholy.  AN surgery is often a life-altering situation and not everyone is emotionally equipped to handle it, especially when post-surgical complications arise, as they sometimes do.  The reality is that, even in the best of post-op circumstances, the AN patient is never quite the same and some folks can't adjust to that reality.  However, your husband's refusal to respond to much of anything (physical therapy, counseling) is selfish, destructive and unnecessary.  You have my sympathy, for what good it may do.

I agree too that a face-to-face, heart-to-heart talk between you two - without distractions and definitely without accusations and recriminations or hysterics - might open his eyes to his seemingly willful destruction of your relationship.  You have to be calm and present the problem more in sorrow than anger or the talk will be fruitless.  Don't seek to find fault and assign blame, just try to find his reasons for being so recalcitrant and opposed to any sort of outside help that might restore some semblance of normalcy to your lives. 

If that attempt ultimately fails and your husband continues to stay in his depression, which you can't change, you may have to consider divorce to keep your own emotional equilibrium.  You didn't mention if you have any minor children, which would certainly be a factor to bring up to him and also for you to consider before giving up on the man.  This situation is brutal and there is no easy answer, as you can tell by reading these posts.  It requires you to be very patient and 'diplomatic' but to face reality, even if your husband won't.  I hope and pray that divorce is not really imminent but I also hope and pray that your husband will start acting like a sensible adult and not a disappointed child.  That thought is just between us so please don't use that phrase when you have your talk (not a confrontation).   

I wish you peace and better days.

Jim

[OMG16]

Dear Drainedone my heart aches for you.  Can you post more info regarding his tumor and how surgery went?  Did he have any complications that could be causing this change in his behavior?

Don't give up on him just yet.  It sounds as if he is incapable at this point to help himself.  Can you get your friends and family together from out of town (since you have moved)?  I think it would be worth a try to have a mental health intervention with everyone who cares for and loves him.  I would also go ahead and call his Doctors and let them know how much trouble you are having getting through to him.  Depending on how bad of shape he is in you may be able to get a 72 hour hold and they can then force him to address his condition.  Is he suicidal, paranoid or a threat to others?  I am not a Doctor and am not aware of your intire situation but you do need to be safe and to take care of your needs.  I am just afraid that if you leave he will not stand a chance in getting the help he so desperately needs.  I do not know for sure but he does sound like he is trying to get you to leave possibly to isolate himself further.  With a 5.5cm tumor he may have had some brain damage that is causing the change in his personality.

Please do take care of yourself and I to would recommend a support group for caregivers and/or a brain tumor support group.  If you need help finding a group or groups let us know and we all would be happy to help direct you.  I would encourage you to use us for support also.  These people on this site are very compassionate and caring individuals who with their sense of humor can help you through this extremely difficult time.  Feel free to send me a private message if you would like to speak more  in private and I would be happy to talk to you on the phone also.

Kisses to your forehead.      16

[sgerrard]

Drained One:

I tend to agree with OMG16, this condition you find your husband in is a result of the surgery, and needs medical attention. I don't know how the system works, but he does not seem to be capable of making medical decisions for himself. I think you are going to need the help of an agency of some kind.

There is one person, Satman, on this forum, who had an 8cm tumor, and could legitimately refer to your husband's tumor as "middle sized." It would help your husband enormously if you could get him to post on the forum, and discover that he is not alone in his present condition. There are others who have been there and done that.

Did he have a hobby or activity that he used to enjoy? Something that would get him interested in living again?

You need some support too. Please do contact those above who have invited you to send private messages, and do come back and tell us more about what happened during the surgery, and what has been going on since.

Steve

[Raydean]

Dear Drained One
I was in a situation not to far different then yours (husband had a 6cm tumor with outcomes)  I've been meaning to reply, but wanted to think over things but know that you have been in my thoughts and prayers.  I hope the following is helpful.

First of all my husband was overwhelmed at first by all of the losses, becoming disabled, loss of job, loss of use of parts of his body, loss of his looks due to facial paralysis, loss of things that he was able to do before and unable to do so now, and loss of friends that couldn't or wouldn't see past the medical issues.  He lost himself, as he knew himself to be.  Like your husband he became angry and depressed.  He lost his faith in Doctors, since most were unable to give him the answers that he sought.  so for awhile things were at a standstill for us.  I'm not a doctor or anything medical, but I discovered  that part of the reason my husband was angry, wasn't anger at all, it was fear.  One of his biggest fears was  that I'd leave him, so he was pushing me away, before i could leave.  In his mind he thought I deserved better then the person he was now.

  He also found the thought of planning out medical treatment overwhelming, it was so big that he couldn't, or wouldn't start a direction.

I did consult an attorney for direction.  For thing was a Durable Power of Attorney.  We went the whole route for everything, but especially for medical.  This gave me the power to deal and talk to the doctors.  they had to speak to me as if i were my husband.   Secondly i sat down and really talked to my husband.  I told him that I was in this for the long haul, and in my eyes he was not less then before,  that none of this was his fault and that I wasn't leaving.  It was at this point that he began sharing how he felt inside.

We worked out a plan that i would research, deal with the Doctors, talk to the doctors. decide on which Doctor he would see. If I made the appointment, he'd do his part by going to the appointment. I would share with him at all times the discussions and pros and cons.  I could give my input, but he would have final say.   Knowing that he'd have final say, he became more cooperative both with the doctors and myself.

Chet wouldn't agree to some treatments, but I would talk to his doctors to find ways to help. As an example when he wouldn't go in for balance issues, he did agree to walk with me around the HS track. (  it was a safe place for him to walk)  There was alot of trial and error stuff.   

As others have said please consider counseling for yourself, it'd be great if your husband would consider counseling, but regardless of his decision, do it for yourself. You need a safe person to talk to, where you can safely share your feelings and thoughts.   Attending a support group will be very helpful for the both of you.  Meeting others that have walked or are walking on the same journey is extremely helpful and good for the spirit.

Remember to take good care of yourself.  This has got to be at the top of the list.  Again, it's so easy for the caregiver to get lost in the situation.   We forget about ourselves and our needs.  Continue to do the things you did prior to before tumor, see your friends, stay involved in activities that you enjoy, but also look for things that you can do together.

If I can be of any help, please feel free to contact me thru the forum

Hugs
Raydean
 

 

[sgerrard]

Great post, Raydean, thanks so much for sharing your own experience with this.

I should have included the ANA resource page for caregivers: http://www.anausa.org/caregiver_resources.html

Steve

[drainedone]

Many thanks to ALL of you for your kind and supportive responses regarding my husband who refuses to be helped.

Since my husbands surgery 17 months ago he has suffered signifiicant facial paralysis, severe dry eye (refuses to see an eye doctor), hand tremors, balance issues when walking, and is easily fatigued. It took a monumental effort of begging and pleading with him to see a doctor for the initial diagnosis of his Acoustic Neuroma. It was heartbreaking and gut wrenching to watch as he walked as if in a drunken stupor, had double vision, facial paralysis, slurred speech, and lost 30 pounds in one month.

When family members expressed concern and worry he had an excuse for all of his symptoms. He told me I was over reacticng to his situation. I still have not received an explanation from him as to how a brain tumor is over reacting!!! Am I angry...you bet I am.

Now to the present. He ignored his March 2008 follow up appointment for an MRI and seeing his neurologist. He labels physical therapists, counselors, and health professionals out there that could help him as useless or incompetent. He summarily dismisses all help by stating that because nerve regeneration takes such a long time nothing can be done. Notices from a support group in Portland are thrown in the garbage by him.

The tumor did not affect his cognitive abilities. He is highly intelligent and well educated. He is the personification of Dilbert in the Dilbert comic. His entire adult life he has been a know it all, rigid, and close minded to any person and any ideas that do not conform with his superior intellect. He must maintain control at all times, and admitting he is wrong about anything is simply unacceptable. After his surgery he told me he knows his body well. That comment would almost be laughable if it were not so tragic. All of the symptoms he had were giant red flags that something was terribly wrong.

I know the tone of my message makes me sound like a heartless and cold *itch. Nothing is further from the truth. My reservoir of compassion, patience, and sympathy have been drained dry. I am at a total loss how to reach or help him. He has built such an impenetrable wall around himself that short of divorce I do not know what to do. He does not appreciate my standing by him, and does not cherish the ONLY caretaker he has. It is a sad and difficult situation. Thanks everyone for listening.

[leapyrtwins]

Drainedone -

IMO you don't sound heartless at all and I am glad you are reaching out to us for support.

Short of the acoustic neuroma and superior intellect, you and I could have been married to the same man    He knew it all, didn't value anyone's opinion but his own; didn't respect anyone - including me; couldn't admit when he was wrong; didn't appreciate any efforts I made, etc.  I put up with this for almost 20 years until I said enough is enough.  It took another 2 years and about $75,000 in legal fees before I finally got him out of my life; however, I'm glad I chose my survival over his need to "rule" my world.  Some might consider me cold or callous, but I couldn't let myself and my children go through the rest of our lives in this situation. 

But I digress.

I'm not saying that you shouldn't be concerned with someone you love, or once loved, but it sounds like your husband has no desire to be helped and you are running yourself ragged trying to help him.  My best advice to you is get counseling for yourself as soon as humanly possible.
 
I'm not advocating divorce, but I do feel you need to "save yourself" from this situation.  In the process of saving yourself you may find a way to save your husband and your marriage also - and if you do that would be great.

Best of luck; feel free to PM or email me anytime.

Jan 

 

[Jim Scott]

Drained One:

Thank you for allowing us the opportunity to offer whatever advice we may have to give.  Of course you have our sympathy and our prayers for a reversal of attitude in your husband.  This is clearly an untenable situation for you.  Your anger and frustration are almost palpable as well as totally understandable.

I'm just an ordinary guy, certainly not a psychiatrist or even a chiropodist, but the fact that your husband has multiple post-op complications is very informative and explains what I suspected, that he's angry at what has happened to him and instead of meeting the challenges he faces, with your willing help, he is retreating into his anger and hiding behind it like a frightened child hiding under his bed, afraid of the 'monster' he thinks is waiting to 'get' him.  He has taken on the role of a victim and by refusing all help, can wallow in his unhappiness and blame others - you included - for not being sympathetic to his woes.  Of course that is ridiculous - but it works for him.  Unfortunately, it makes life extremely difficult for you, to put it mildly.

What to do?  As you so aptly state, it is "a sad and difficult situation".  Family/medical intervention might work but is hard to organize when the patient is absolutely unreceptive to any input that clashes with his position that 'he knows best'.  His uber-defensive posture makes anything you attempt likely doomed to failure because he wants it to fail so he can remain behind his wall of denial and anger, blaming others for 'not understanding' and pretending to be in control when, in reality, his 'control' is immensely destructive to your relationship, whether he realizes it or not...or cares, which is questionable. 

I will concur with the astute posters that suggested counseling, even if your husband refuses to join you, to help you cope with this unsustainable situation.  Please know that many prayers and wishes for a satisfactory resolution of this terrible situation will occur soon.  Again, I hope divorce is not the answer but whatever happens, know that you've done everything in your power to  work out these issues but also realize that in a relationship, it takes the efforts of both people involved to reach a desired result.  If your husband refuses to work with you on this watershed issue in your marriage and makes your continued presence with him  virtually impossible,  you are going to be forced into doing something that you probably never imagined doing.  I still advise you to tell him your feelings (in a calm, controlled manner) before acting precipitously but in the final analysis, you have to be fair and reasonable with yourself and know when a situation is beyond redemption, as this one may be, although I hope not.

We all feel for your anguish and want you know you'll be in many thoughts and prayers in the coming weeks, certainly in mine.  Again, I sincerely wish better days for you.

Jim