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Hi all. Has anyone separated from their spouse in need of some caregiving? I have a spouse with a TBI following a brain tumour resection and I feel like I am living a nightmare day in and out. I am in my early 30s and life is slipping me by. I have panic attacks daily and don’t know how I am going to continue doing this. Going on three years. Juggling a corporate career and so unhappy with my personal life, I just don’t know what to do. I feel it’s not sustainable. Thanks so much for your inputs. 🙏🏻🙏🏻🙏🏻

OK, this is going to make me enter the "heartless and hated" camp I am afraid. There is so much I don't know about what you are going through. That is to say, after traumatic brain injury and tumor resect, and 3 years in, I am just going to assume that there is not now anything left of the man you married. That is to say that he is alive, his body functioning, but he is more or less vegetative. IF I am correct in that assumption, then for me it is not right to expect you to give up your life, along with his that was so sadly already forfeited to circumstance.
I have seen two people go through this. The first friend has a wife and two young sons, was vacationing in Tahoe, she awakened and said she was going for a before breakfast walk on the shore and didn't return. She had fallen from a cliff into the water, and what was saved was someone in a vegetative (for want of a better term and so all know what I mean) state for MANY years and until her death. He had two young sons to raise, and honestly no wife, and money disappearing like wildfire. The second, a woman friend whose hubby ended up much like yours from motorcycle accident. It was a few years before each realized that their spouses were simply not there. They separated, divorced actually, so that there were separated finances, and money to raise the sons in the first case, and because she was young, newly married in the second, and her husband was living, though gone. For me, this would not be sustainable. You will be judged harshly. There will be many who will say it was "for better for worse". For me that is not the case. I would hope my husband would leave and make a life. It is something we have talked about, but we are together many years, and have had time to discuss many things. I think this is a decision only you can make. I think that whatever decision you DO make will leave you a world of pain to live through, but I think that only one decision will give you a life to live after the pain. As I said, I don't know his current state nor his prognosis. I am assuming that your separation would be something he doesn't even know of. So incredibly sorry for what you are going through. I have seen people go through it and it is devastating. My friend in the first instance divorced, eventually met a wonderful woman, his boys are raised and one works with him. He travels the world and lives a full life and takes nothing for granted. For our fragile selves, this can happen in an instant.
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JoAnn29 Jul 8, 2019
Your are not heartless, just realistic.
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The last 4 months of my husbands life, I placed him in one of our rental properties and hired a 24 hour live in nurse. He had cancer for 11 years, one surgery and treatment after another, including an inoperable brain tumor, which made him mean and abusive, both verbally and at times physically. I was working full time, I just couldn't live with him anymore, I wasn't sleeping and was in a total burnout. When rational, he understood and it worked for us, I did visit him 3 or 4 times a week. At that point I didn't care what others thoughts, I was worn to a frazzle.
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Elizabeth21 Jul 8, 2019
Thank you so much for sharing. I am hoping to find some workable solution as well. Did you ever regret your decision, and if so, why or did you draw comfort in knowing you were running on empty and needed to do this for your own self preservation? Thank you for sharing your story of strength and survival!
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From what I understand about TBI, it takes lifelong work and rehab for the patient.
Explore all your options, including if he has parents who can take over a guardianship or conservators, and care for their son.

Since your panic attacks are also disabling you, here is a married couple requiring more care than can be realistically provided by each other. Get him that care, maybe in a LTC facility specializing in TBI.

Once you are living separately and each of you has the care you need, whether you divorce or not is your choice. Get wise counsel first.

Hope that is somewhere you can start with a plan.
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Dear young lady. There are ethical and moral issues here for you to deal with.
However, more important at the moment, is to realize that if you have an emotional breakdown you will be unable to care for you husband, at least for awhile...There will be no warning or time to get ready...Someone will pick up the problems and handle them without any effort on your part as you would be incapacitated. I urge you to get some way to have some time off, if not for a number of weeks at a time, at least two or three days a week....You may want to consider talking to your clergy man/woman, counselor, etc. It may cost a lot, but do it anyway.

Once your mind and body has at least some relief on a predictable basis, you can deal with the ethical and moral issues, but if you crack up emotionally, it is going to be messier...

In my case I cared for my paralyzed wife, who was unable to speak, could not stand or walk and had to be spoon fed for two years at home, then I had a heart attack, then for ten more years she as at a nursing home and I visited her twice daily and also hired paid ladies to help her with her evening meal and visit. We spent well over a half million dollars on her nursing home care. I was away from town only about 20 nights in all those 12 years....I consider it the most important accomplishment of my life....I do not say you should feel likewise, but my heart attack made it impossible for me to care for her at home any longer...

May God bless you as you labor through these difficult times...

Grace + Peace,
Bob
PS The missus died in 2017 and in April 2019 I married a remarkable widow and we are living the "happily ever after" lifestyle together.
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thepianist Jul 12, 2019
Thank heavens karma sometimes seems to work! You deserve this new wife, I'm sure your first wife agrees, wherever she is.)
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I see where DH is home. Does he know u. Can he care for himself. If no, then can he be placed in LTC under Medicaid? Who cares for him.

Yes, for better or worse but your worse came before the marriage got off its feet.

I think its time to talk to a lawyer. There are options out there. Your worse, it seems, will never get better. No light as the end of the tunnel. You really deserve more at your age. You need to find out what your options are. Even if divorced, will u have some financial responsibility? Does he have family that can step up? No, there will be people who won't like what you do but your physical and mental state are involved plus you ability to hold down a good job. Really, u have never had a marriage.

By the way, this is coming from a 69 yr old who has been married for 38 yrs. Good luck and please come back and tell us how it works out.
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Elizabeth21 Jul 8, 2019
He doesn’t have a strong family support system. His mother is capable of assisting with his physical challenges but lives in a different province and is so bad with money. I wonder if I should explore the appointment of a curator.
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I found myself in a similar situation, only my husband had kidney failure. He was also quite verbally abusive. In my early 30's I was the only breadwinner in the family with no kids (thank god). I took care of him, made sure he got the diet he needed to be on and held it together for about 3 years before getting burned out. We had no life to speak of, it seems like everything was about just surviving another day. Eventually I had to leave him. There were plenty of people who thought ill of me for doing so, and I can assure you it was not an easy decision. To this day, I still have guilt about it, but given the nature of an abusive relationship, it was the best thing I could have done. Looking back, I'm glad I did it. He went on to survive another 7-8 years, and from what I've heard from friends, did quite well on his own. Some decisions are very difficult, and this is certainly one of them.
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Elizabeth21 Jul 13, 2019
Are you happy now? How is your health?
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Thanks so much for all the responses. It’s so comforting to know that I am not alone. He isn’t in a vegetative state. He has single sided deafness, facial paralysis, swallowing difficulty, balance issues, tinnitus, memory/cognitive difficulty, tremors etc. His personality has changed from a once charismatic person to a cynical introvert with a short fuse. He is very forgetful and clumsy because of the cranial nerve impact the tumour has had and just a very different person. Every week poses new challenges and it takes such an emotional toll on me. Just this week he injured his back. The week before he was battling to move his foot because of nerve damage. He doesn’t really have supportive family. In fact, his one living parent and brother are cause of additional stress owing to learned helplessness. I would have to explore what my options are for continued support. I can only pray I’ll survive this. It feels so overwhelming. I feel so guilty and self critical even though I know I am doing everything humanly possible to help him. I have also recently started feeling like I underperform at work even though haven’t received feedback of that nature. I just feel like I am losing my sense of self even though I try and prioritise self care...Have you experienced this?
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AlvaDeer Jul 8, 2019
Please don't feel guilty. Your husband is no longer the man you married. We leave husbands and wives all the time because they changed or we changed or once we knew them we didn't really like them. The fact he is so helpless is making you feel guilty and responsible. You are neither. He knows, then where he is at and knows that he is not that man you married and he is likely absolutely TERRIFIED that you will leave him. And likely horribly depressed (has anyone addressed that) which makes this all the more difficult. I don't know what the prognosis is on the tumor. My brother has one that is there, benign for decades, but has ruined his balance. So while he may WISH it would kill him, it will not. This man is not the man you married. To me the best thing is to simply tell him that you understand what he is afraid of, that you will leave. And that honestly, you probably will, but that meanwhile you want to be his friend, as that is what the two of you can have between you. And you want to be what support to him you can. That were your places changed then you would want him to have a life, no matter how much that hurt. This is a terrible choice. A terrible dilemma. Your choice is honestly to sacrifice your life to this, to be a Saint and a Martyr to his needs, or to have the courage to lend support as a friend, and to move on with your life. I am so sorry. I honestly cannot imagine this choice. Please see someone for help. Often Licensed Social Workers who have training in therapy are better at this sort of "life change" situation. They will help you comb out where you are, and how you want to move forward. There is no answer here that will save either of you pain. Stay? He is in pain and you are. Go? He is in pain and you are. But that latter has hope for a future of some kind for one of you. Awful. A simply awful choice.
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Here is the cold hard truth. He will qualify for more services if you divorce him. If your decision is to leave do not just leave. You will still be responsible for some financing related to his care. Of the two choices divorce is best. This is a very sad place to be. You need hugs and good friends to acknowledge what you are going through. Take God with you on this your journey.
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You have lost your husband and have to face things alone, no wonder you feel as you do. He won't ever be coming back. You are very young and need to have your life. If he loved you, I would think he would not want you to share in his suffering. That is, if he were himself, which he never will be again. Also, since you are married, his condition can become your finacial burden for a long time. But you are a woman without a husband now. The best you can do is see he is cared for in some way. There is really nothing you can do for him personally. It is, in some ways, worse than if he had died because that grief has a normal process. In this situation, the grief never ends. On top of that, you feel guilty for wanting out.
Speaking only for myself, I would never want to put another person in the position of being tied to me and suffering because of that. It would hurt me greatly.
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Elizabeth21 Jul 13, 2019
I also reflect on role reversal. I wouldn’t someone to go through what I am but I also appreciate that the other party must be feeling so vulnerable and scared. I pray daily just to have the depth to respond in kindness and compassion trying to understand the emotions he must be going through whilst still acknowledging my journey and communicating how I feel. It’s just not sustainable. We’ll be trying a trial separation but I will still be taking care of a lot of the admin, finances etc.
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Yes, am doing that very thing. My spouse has bone cancer and refuses to follow Dr. orders going on 10years.smokes 3 packs a day...my lifecis slipping away. So I talked to my doctor and friends...I have the right to live my life. So 2 days ago I filed for a legal separation. So its up to him and his family to help him. Yes, you will have people and family not like you but your young...go live your life with No Regret.
I'm 75 but with a mental age of 50 and active and want to live the rest of what I have left the way I want too and happy.
Dont be afraid of what others think they dont live in your shoes ...Go be happy and true be know your spouse would want you too...MY ADVICE GO BE HAPPY!!
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Davina Jul 12, 2019
Good for you, Boots. It takes a lot of guts and backbone to leave such a situation at this time of life.
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