Has anyone separated from their spouse in need of some caregiving?

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Has anyone separated from their spouse in need of some caregiving?

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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. 🙏🏻🙏🏻🙏🏻

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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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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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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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Your are not heartless, just realistic.

(11)

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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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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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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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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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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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So so hard. In your 30,s. I take it there are no children (?) which is a good thing here
i get the feelings you want to divorce but are so worried about what others will think. Don’t be. You might be surprised

you are very young with a lot of living to do and you should follow your instincts. Your spouse has a father and a brother He is not without help. They will learn to cope and help.

Please let let us know how you go

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No children. Thanks so much. Hoping for guidance and peace along the way 🙏🏻

(2)

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You could take the small step of getting your own place and overseeing his care from there. That would lessen your exhaustion, help you keep up your career and begin to get your life back.

You are in an unusually tough predicament! But as someone mentioned, you might be surprised at how much support you get for taking care of yourself.

My brother has a TBI from a motorcycle accident 50 years ago and it ruined his life. He never worked and developed a severe drinking problem, layered with pot. He can't remember or learn and has poor judgment and motivation. He did marry for awhile but was a clod of a husband. They had one kid who's got problems from growing up the way he did.

I hope you watch out for yourself first. Good luck!

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If you do leave I hope you'll first be sure that your husband is in a secure situation and has the care he needs, whether in a nursing home, back with his mother, or somewhere else. I guess I'm the odd man out here because I think we do have responsibilities "in sickness and in health," and shouldn't abandon a spouse who probably can no longer take care of his own life. Suppose the roles were reversed and you were the one who'd become disabled? I think you yourself aren't sure of what's the right thing to do. What is your best, noblest self saying to you, Elizabeth? Good luck in finding your way.

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Great advice from the others. Additionally, do try to take care of your own health. Panic attacks are often caused chemically. In my late husband's case, monosodium glutamate (MSG) gave him panic attacks. MSG is in many processed foods (things in cans, jars, and boxes). It is often disguised by other names, such as "texturized protein." When buying food, try to be a label reader. If you don't know what an ingredient is, it's best to avoid it. Stick to fresh or frozen produce, and simply packaged meat and animal products and dairy (if you can handle dairy). Go organic if possible.

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Hi Elizabeth, I was reading through the responses and there are many great pieces of advice here; I think you're in an especially difficult position and are showing a great amount of composure and thought in working through things.

Something that came to mind as I was reading- have you tried to view your husband's new personality changes without the lens of the TBI? I wonder what that would be like. My husband (who does not have a TBI, so yes it is a rather different comparison) has some pretty serious personality quirks that lead to a great deal of fighting and a whole cloud of negativity, until I tried relating to him where he was. I read books on his personality (including several about introverts and highly sensitive people). He read them too. I think personal counseling for you both, and couples counseling together, is absolutely essential. We also benefitted greatly from the book, The Power of Two, which discusses relationship communication strategies. They also have a workbook. I don't know if this is beyond the scope of what he is able to do or what you feel is the best direction for you and for you both, but I do feel like coming at the matter a bit differently may help ease tensions between you and help improve his behavior- It does sound like he's feeding off your stress, and cannot process it out, which is causing a spiral of negative feelings between you. Maybe there's a way to interrupt that cycle with something more productive/ positive.
I do also agree with previously stated advice to take care of yourself, explore alternate living arrangements, and explore alternate / respite caregiver options.

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I understand TBI’s may cause personality changes and that those impacted battle with outbursts, aggression etc. I have definitely noticed changes in his personality and ability to manage conflict. His short fuse is fairly contained as I always try and diffuse matters so it’s as easy sailing as possible. He can’t focus on more than one conversation topic. He gets easily overwhelmed and can’t remember things. I make lists on an app called Listonic to help him remember. I will have a look at the book but to be honest I just need a break right now.

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Have you thought of Adult Day Care?
Are there independent Group Homes in your area?
Either of these option would give you a break, give him something to do and in the Group Home there may be some Job Skills that can be either utilized or retaught.
Even if you had to place him in Assisted Living there are plenty of people on this site that have placed a spouse and are now living apart. He11 I had my Husband at home and there were times when it felt like we were living apart. Him in a hospital bed, me in another bed in the same room then later we moved his bed to another room. He was in his "world" I was living my life best as I could. Trying to keep myself sane, and connected to the other world.

There is no "right" or "wrong" thing to do. You do what is best for you and for him.
I was told years ago statistically many caregivers die before the people they are caring for simply because we fail to care for ourselves. Our health suffers both physically and emotionally. Don't let yourself become a statistic.

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It doesn't sound like he would be a candidate for assisted living. Would probably need memory/nursing care.

(2)

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Is your husband a veteran? Eligible for disability? You may be entitled to financial or other benefits that could help. Is there a support group you can join to see how others are coping?

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I am sorry for your situation.
Have you looked into having him admitted to a rehab facility? Are there any adult day health facilities you can take advantage of?
Do you have an agency that addresses Adults with disabilities?
i would check all of these possibilities and I would also recommend you find some form of counseling for yourself to deal with you panic attacks before you develop a physical disability yourself.
It is not easy ( this I know first hand)
but don’t do anything that is going to make you feel guilty as it will only complicate things for you
Good Luck !

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Noted, thank you so much!

(1)

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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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I take care of my 83 year old mother. I have faced burnout too. You have got to make time for yourself. Demand family help out or get a caregiver who can give you time to go to the spa or gym. My mom has been resistant but it’s what I need. I have had a lot of long talks with her about it.

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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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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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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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You need to take care of yourself, first and foremost. But at the same time, like you, your husband is young and has a long road ahead too. You don't say how long it has been since the resection. If it were me, I would make sure that I felt safe, but I would also advocate for any and all interventions to improve your husband's situation. You would want him to do that for you if the roles were reversed. Does anyone out in this forum have experience in TBI? My dad had it, and after trying other methods like beta blockers, mom and their cardiologist came up with the concept of a pacemaker to do the same and it worked. The quality of their day-to-day life improved dramatically. Part of your stress is not seeing a light at the end of the tunnel. I wish the best for you in this difficult situation.

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Elizabeth21 - I just spent hours last night with my 38 year old Niece, an RN, who is going through the exact same thing. It has been four years since her husband was hit by a car and suffered a severe TBI.

He spent 3 months in ICU/Rehab and 1 year of outpatient Rehab. It turned their world upside down and she worked like a Warrior caring for him and getting him to all the doctor appointments, dealing with hospital bills, insurance, a lawsuit, etc.

Miraculously, he learned to drive again and returned to work under supervision. His current state - he is extremely deaf, introverted, no friends, wants her undivided attention, and he has trouble controlling his temper. He has been sent home from work numerous times without pay due to his outbursts and lack of control. He is now in jeopardy of losing his job. He spends his day watching movies on his laptop with earphones on. No interaction, will not play with their son unless prompted. Yet, when she tries to get out and have some quiet time to herself, he wants to go with her. He cries and pouts if she tells him no. She refers to him as her second child.

She has hit the wall, and is seeing a Therapist and Lawyer to discuss next steps. As she said if there are no changes, she will die of a heart attack from the stress.

A very heartbreaking situation. My Prayers are with all of you. May you find Happiness and Comfort in your next chapter.

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I have found such comfort just knowing I am not alone on this platform. My friends and family cannot relate. I don’t know how your niece manages with a little one. I don’t have children and can’t see myself having children with him. It’s heartbreaking but trying to look for the lessons. Please tell your niece she’s not alone and know I will be thinking of her and saying a prayer for her. Xx

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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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Are you happy now? How is your health?

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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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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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You do not say what position your husband is currently in, whether any improvement is expected or possible, whether he is likely to deteriorate in the short term, what he knows and recognises. You are very young to tie yourself to someone for whom there is no chance of improvement and who is in a state that he doesn't know you. I think the advice below on opting for divorce so that he gets more support is one you should consider rather than just leaving, but you have to decide if there is any of the man you married remaining and is someone you still care for and can care for. Horrible horrible position to be in, pleased to feel able to come here for people's views and support. x

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He has permanent damage including single sided deafness, balance difficulty, facial paralysis, chronic fatigue, memory and cognitive challenges, tremors etc. Some improvement is possible but it’s nerve damage so not much.

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Dear young lady: You will get through this, but only with respite through agencies such as the Visiting Nurses, etc.

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Thank you so much for each and every response. I am carefully working through all the thoughts. I am so glad I found this platform. Thank you. 🙏🏻

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Elizabeth, you wrote: "We are going to try a trial separation where he’ll be staying with family. I’ll visit still." Yes, good, you've made a decision and it sounds like the right decision, IMO. Now, try to not let guilt pull you down and negate your decision. We caregivers are "guilt magnets", but we know what we can and cannot handle, and you have obviously reached your limit. Good luck and be well and happy.

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Consider this. You are young and you have a right to live the life that was meant for you. Recognize we are not all caretakers. Some people can be engineers, others can be teachers, etc. But we are not all fit to do some jobs. We must face that. It sounds to me as if this man needs to be a facility where he is cared for and you can live the life you were meant to live. Then over time and along with the circumstances that will come up, you will know better if you should separate or if you want to stay married. This is best for him and best for you. The future has a way of working itself out when there is a bit of distance before final decisions are made. I speak from personal experience and can say that is very true.

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