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My wife is paralyzed, confined to a wheelchair and sleeps on a hospital grade bed to prevent bedsores. I work 6 days a week and have an aide there while I am gone. They help her in the morning with bed bathing, dresssing etc and transfer to her electric wheelchair. If the day doesn't involve a doctor appt they will do light housework laundry etc. which she helps where she can. She was so active before the accident 7 years ago and I know she wants to do more and feels so helpless. It doesn't help that she deals with chronic nero pain which is common for SCI people and must lay down every 4-5 hours. The aide leaves an hour before I get off work and I usually call my wife to see how she is doing to see if I can make a quick trip for grogeries or some other needed errand. Many times I will get a text to hurry up while I am doing that because she needs to lay down or requires a BM or her bladder spasm caused her to soil her pants and she is sitting in pee. The level of stress I get is high as I try to hurry up with the shopping to get home. I get she feels horrible about this and I try very hard to put on a happy face when I get home. It can be very hard to treat the event like it's no big deal everytime but I try cause I don't want her feeling any more of burden than I know she already does. So I take care of my caregiver duty and lay her down after. I than try to find something quick and easy for my late lunch and sit down. I try to unwind and "refresh" but it's hard not to focus on the day and where my life at 49 is at and the future. There are not many options or family and she would need to be in a home without me which scares me to think about and doesn't help the anxiety and stress I already have. I don't know what type of feedback I am looking for if anyone has words and maybe this is just a "vent session" for me. I don't feel any different for typing it out and my outlook seems the same but I'll get through the day and we will see what tomorrow brings.

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Perseverance64 Living every day as a caretaker is not a job I could do. You do it every day. You are absolutely suffering. Is your wife able to understand the current situation? Someone needs to take action. By you coming to this site and asking questions is one of the best things you can do. This site helped me so, so much. When I first came to the site it helped, but as I continued to ask questions and learn my life really did change....for the better! I can't thank the smart folks on this site enough for their experience. My loved one is my mother. It broke my heart when she went to a nursing home. Long story but guilt, confusion, anger, all thes feelings were a part of this long process of coming to terms with the reality of my situation. For you perseverance64 it seems there is a lot of learning, changes and action needed before you can rise to a better level than where you are now. You and your wife need to decide if you will do it together or separately. You can do it! Just keep coming back to this site. The wise folks here will help. It won't be easy, but it's not acceptable to live with a broken heart. You both deserve love and friendship.
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perseverance64, you had mentioned that your wife suffered a Traumatic Brain Injury.... would it be possible that part of her brain that feels love had been damaged? You mentioned children, are they still living at home or are they out on their own? How does your wife react around the children? Same as she reacts around you? If yes, then you have your answer, her brain isn't allowing her to feel love and respect.
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Persevere, Nora made an excellent point about nursing care. When my stepdad was in the hospital for a hip replacement rehab and nursing was necessary for a period of time after that. Because this happened on an emergency basis we had no idea of the facilities available and the huge differences in care and atmosphere. Because it was a fast placement the social worker at the hospital gave us three places to check out. I did not find any of the places acceptable but was not educated about them. There was an incident that occurred in the nursing facility that made me want to get him out of there, desperately! So I started shopping, found a beautiful, bright facility with caring staff and moved him after about five days. The difference was unbelieveable. I think what the hospital staff did was give me names of facilities that they know often have space available. Makes her job easier, doesn't it. I also thought perhaps doctors and other staff had financial interest in these sub par nursing centers. Who the heck knows.

My suggestion is to check out other facilities, find one acceptable, then reconsider a move for your wife knowing that she will have round the clock care.
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Thank you Nora789. You have a very good understanding of what I am dealing with and it makes me curious of your situation that got you there. Sometimes I wonder if I'm suffering from PTS but those feelings of anxious, tense and stress seem to be permanent baggage I wake up with and carry thru the day. I know those feelings of love & friendship are a huge factor because I remember how different it made me in those times I did receive it. It's a real self esteem killer when you do so much and wonder why it isn't there. It's quite a different circumstance when you reflect back on things in life and see the X and O's of what you did wrong or could have done different that prevented those things. Without that you have no choice but to internalize and make it part of your self worth. So whats the answer when you're in a relationship that doesn't provide you support, love, intimacy and respect. I've touched on the subject which felt like dipping my toe in an ice bucket. Maybe she just doesn't want to discuss what she already knows and feels anyway. Sometimes I think she is the one feeling trapped and would walk away if she could. This doesn't leave a lot of options for me but to push everything down and go about the day like everything's normal. I get it aint healthy and can create both mental and physical health issues but that's just the way it is. Sure I wish it was different but I'm afraid this long road has left me lost and the only direction I can go is straight ahead and watch out for the coming potholes. I'm sorry for coming across so negative but this has been quite a journey and I guess some wounds are too deep to heal. P.S Thanks for helping with the guilt :)
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You are not alone when you say there are days that test our faith. I can't help but think of Maslow's Hiearchy and how we humans need certain things, like love and friendship, esteem, security, and lots of physical needs too. If these needs are not met we feel anxious and tense. I have to believe MANY of us do not have our needs met. In your case it's an understatement. Maybe you have security from your job and your faith in God, maybe you have food and shelter, and it sounds like you feel pretty good about yourself, but you are lacking in the love and friendship department. It's your wife's job to supply you with love and friendship. Get to the bottom of why she is not providing this to you. It could be something simple you can both change. Talk to her about it because if you deny yourself you will be anxious snd tense and she will know. And don't feel guilty for being human....ever. God is responsible for that. 😊
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I appreciate the input and the thoughtful replies. I think the core of what makes it so hard is that I don't feel any respect or love from her. Perhaps it's a "man thing" but most of us want and need this from our spouse. I say that because I know how different I felt on those few times she has shown me that. I have been through some real battles (mostly emotional) which began when I was told to make a decision to end life support shortly after the accident and she laid in a coma. I leave these decisions to God and she was finally able to come home 8 months later. Do you know what it's like praying for her to be able to come out of a coma to see her kids again but be told she probably won't be able to hug them. To think about how cruel of a punishment that would be or would they appreciate being alive no matter what. Nobody has that answer but you must decide anyway. Sometimes I even wonder to this day if I made the right decision but it has nothing to do with me. I just want to know or feel that my battles have and had a purpose even if it's just words from her to show me. Her life is incredibly hard now and there is no way I would put her into a home just to make mine easier. I am honestly bewildered when people say I'm strong for staying the course. There are not options to that. You get up and face the day whether you like it or not. I don't know how anyone could make a decision that would make their spouses life worse than it already is. I feel guilty for even thinking it. I believe there is a God in heaven who has reasons to all these things in life we don't understand but there can really be some days that test your faith. I'm not looking for a medal. I just want my spouse to show me a fraction of the care and compassion I try to give them everyday. She is at the center of everything that happens with my day for her care, medical issues, therapy, treatment options etc etc.Let me feel we are in this together and I can stand tall with the pride and respect I think I've earned coming from the only one that really matters.
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I read your story while I don't feel qualified to give advice I want to say how much I admire you for all you are doing. Maybe having that previous bad experience with a nursing home is stopping you from even considering an alternative living situation for your wife (and you, as you will visit there a lot). You said you wonder what the future will bring and if your wifes condition cannot improve you may be forced to consider assisted living or similar. I say that because you are still very young and as you get older it will get more difficult to provide care. Heartbreaking as it seems, another living situation may bring new people and/or activities for your wife. Does she feel like she is a burden to you? If so she may enjoy being in an assisted living environment. I don't think a nursing home is good, because I too have had bad experiences. Keep caring as long as you are doing a better job than anyone else AND are able to take care of yourself.
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Thank God you have some help lined up. And thank God for her having a devoted spouse! My question though is has she ever been in a full-fledged rehabilitation program? Or, if so, has she made enough progress or change to consider a repeat stay for specific achievable goals that would make both your lives better? Is she getting anything appropriate for the neuropathic pain? The TBI is not so severe that she can't communicate and use her hands at least some, and with a thoracic level paraplegia, many people achieve quite a high level of independence. Intimacy should not be impossible either and a really good comprehensive inpatient rehab - not necessarily a subacute facility of even community hospital based one - would have the expertise to help you address it. The seeming lack of empathy is not uncommon post TBI, its not so much they don;t care as they don't have such a good grasp of another persons perspective or pick up social cues very well at all.
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First I m so proud of you for sticking and doing the right thing. Most men would have divorced her and abandon her . You are a helluva guy. first you need a better support team. Can you get two part timers to cover the entire shift when your at work. The late shift fixes dinner. I find a cleaning woman to be worth her weight in gold. Give 6 hours for yourself twice a week. Less you will burn out, working 6 days a week. Good luck we are here for you. Sometimes you have to vent to know what you think.
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I get it-- been there/doing that. Remember that your feelings have nothing to do with the love you feel for your spouse/loved one or the compassion and devotIon to that person. It is exhaustion and the overwhelming feeling that it is "all me, all the time". You are trying to do everything and be everything to everyone, and hold down a full time job. The emotional stress is worse than the physical. While people always suggest, "take time for yourself" and these same people mean well, but WHEN is it that you are supposed to find time for yourself? I Agree that just sitting outside , walking, even if it just around the block does help, but writing my feelings down and going back and re-reading my thoughts/feelings gives me perspective on where we are now, where we have been, and how we handled it. I pray about what is on my heart, all of it, my hurt/anger/fear. GOD ALREADY KNOWS your struggles, and HE always opens a "door" and HE gives me insight and strength to move forward. It is not easy, and at times each day seems daunting, but try to remember that when that text/phone call comes to "hurry home", is it a true emergency?? and put it in perspective as to worse case senario and pace yourself accordingly. That may sound insensitive but looking back at when I "jumped and ran" and then reevaluating whether it warranted my "jump and run" response, I have realized that in order to maintain my sanity and my stamina, I have to evaluate each situation and phone/text as whether it is a 911 or not. This type of message board is a great way to express what you are feeling, some people are truly walking in your shoes, take away from it what works for you, I get it!
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