I want to escape from a burden I'm tired of.

My S.O., who seemed on death's door in the hospital on Sunday, became way improved on Monday. I was worried he wasn't coming out of that hospital alive. Now I'm worried he is coming home soon and that I may not be able to cope with caring for him. I think it's becoming physically and mentally too much for me. If I wanted to back off how much responsibility I have for providing his care, now would be the time to do that. He is in the hands of the hospital staff, and no law says I can't leave him there. Of course, if he's recovering, he won't be able to say at the hospital much longer. They are already asking me to pick out a rehab facility for him to spend time at before returning to his apartment. He is telling me that he doesn't want that, but wants to just come home. Sunday night he blew up at me in front of hospital staff.

He's only been at home over the past year by virtue of me practically living with him in his apartment. (I have my own place, but seldom go there.) He has been nearly totally dependent on me for everything. He can't even shave himself. But he blows up at me on a regular basis, especially in front of others. Recently, at home, in front of a home attendant, he accused me of spending too much of his money at Walmart's. He's always sorry about outbursts like that and tells me to just forget what he said . . . that he didn't really mean it how it sounded . . . that I took it the wrong way. I think I know when I'm being criticized. Not that I'm above being questioned for how I do things, but, if I were as incapacitated as he is, I would love to have someone like me doing what I do.

My main compensation is that, when I cook meals for him, I eat for free. (Though I pay for some stuff I get at the store that I like that I know he won't eat.) His remark about me blowing his money seems to be about the expenditure on groceries and household things (like a new shower curtain.) That outburst seemed really out of character, as he had been consistently telling me to get whatever I wanted and to pick myself up a bottle of wine, when I shopped. Sometimes I think he likes to "show off" in front of others by denigrating me when someone else is there.

My mind is in so much turmoil that I almost wish I was dead. I am lonely here without him. I dread losing him. I miss how content we are together much of the time. (And we are.) But I dread him coming home and us going back into that pattern. He accepts care from others very cooperatively without complaining. But, at me, he pitches one fit after another. If I shower him, he complains the water is too cold, or too hot, and I'm not getting it done fast enough. If I comb his hair, I'm hurting his scalp. If I clip his fingernails, he lets out yells that I'm hurting his fingers. It sounds almost comical, even to me, as I describe this. However, the unrelenting onslaught of this stuff makes me a nervous wreck. Two weeks ago, after him hollering while I showered him, I broke down sobbing and left the apartment for an hour. (He said the water was hitting too hard on a sore spot he has.)

It would seem that I must be a terrible, bumbling klutz, but the odd thing is that he's not the first person that I've rendered these services too. I've done this for a living and been well regarded for my caregiving abilities. In the past, I've been paid well to care for wealthy individuals who would not have had to tolerate an incompetent or inconsiderate caregiver. I've been hired by people who had previously fired a string of nurses and then found me and were more than pleased. I remind myself - and him - of that, in an attempt to reassure myself that I am a capable person who knows how to do what I'm doing. I thought I had unshakable confidence in my abilities and in my worth. But I don't anymore. I feel, sometimes, like I'm nothing. That's not all attributable to being in a difficult relationship with this man. I've experienced failures in my life. I've coped poorly with some challenges along the way. But, when life is tough, a dependably affirming, supportive relationship can be the "rock" on which we build and rebuild. I've not had that. He brought warmth, affection, humor and acceptance into my life. He used to be - at times - sweetly nurturing toward me. While I had pneumonia sixteen years ago, he served me breakfast in bed, fluffed my pillows and washed my clothes. Those nice memories, however, are interspersed with remembrances of some pretty miserable treatment.

We lived together, on and off, for intervals of years at a time. After one long span of time living together, I left because of how verbally abusive he became whenever he drank, calling me an effin' a$$hhole over and over. On my way out the door, I wrote on the wall with a black Sharpie, "I am not a piece of *****." For years I lived on my own, but went back to him when he stopped drinking. That turned into a fiasco. During a three year period of my having employment instability, he repeatedly told me what a loser I was, which I also telling myself. One night, alone and drunk, having severe anxiety about my newest job, I cut my arms with a box cutter and ended up in a psych unit diagnosed with severe depression. (I was never a "cutter" before, or since.) I recovered, but then I got fired. My supervisor said she knew I was being treated for depression and that it was affecting my job performance.

Eventually, I was back maintaining steady employment and moved away from him again. That was ten years ago, and I'm retired now. I still have the same apartment. It's comfortable, and I was enjoying reading, cooking, gardening and tending to my bird feeders. Occasionally, I would go out with a girlfriend. For the past three years, though, I'm hardly ever home in my own apt. He can't really be left alone for more than a couple of hours. Even that is chancey, so I usually only leave him when there is a home attendant to take my place. Yet, despite how much complaint he has about me, he tells me that he hates having an attendant there. When he needs personal care, if I'm around, he will tell the attendant to go get me. When I take an afternoon to be off doing my own things, he will not allow the home attendant or home health aid to do very much for him. He will refuse getting cleaned up and tell them he wants nothing to eat. Then, two minutes after I return and the attendant leaves, he will tell me he's starved and ask what am I going to cook for him.

I am so conflicted about what to do next that last night I felt suicidal, as absurd as that sounds. I am dreading going to visit him today at the hospital. I just want to take some Vicodin and stay in bed all day. I want to not even answer the phone, if it rings. Writing all this stuff has calmed me down, but, when I started this thread, I was mentally, and even physically, a wreck.

I know members here have read threads I've previously posted, basically outlining this same soap opera. It's a dreary story. I'm sick of talking about it, myself. Clearly, I have alternatives to what I'm doing. It gets monotonous hearing someone whine about the same thing repeatedly and then do nothing to alter how they're living. There is something really wrong with me. Now I'll go to sleep. That's my refuge, if I don't have bad dreams. But I often wake up feeling worse . . . feeling that my life has been one giant waste . . . feeling that I have no interest in living anymore . . . dreading that one day I'll be old and incapacitated and trapped in some miserable set of circumstances like my boyfriend currently is, but not having someone like me to give a crap. He doesn't even get depressed. A lot of the time, he's quite content. I tell him that the way he talks to me gets me very demoralized. So now's my chance to escape . . . while others have the responsibility for him. I could just leave him and his problems in their hands.

Rose, youve gone a lot deeper this time, about both his feelings and yours. How do you create a life youre happy with, even now?

I don't have time to reply at length at the moment plus I need to think it through, just wanted to send you many hugs.

My heart goes out to you Rose. I'm not tired of hearing about it. I hope you'll continue to post and use us as a sounding board. It sounds like you are standing at a cross roads. I think you know something needs to change if you stay with him. You deserve a good life that fulfills you. You are so down right now you might not be able to see that. Do you love him? Are your needs being met? What are you getting out of this relationship? You sound like a good, caring person. You need to make yourself a priority. Thinking of you.

Rose you most definitely are not a klutz, you are doing a wonderful service to someone who now seems unable to recognise this. Dementia is a dreadful disease but I think your difficult relationship precedes this.

It's not for me to tell you what to do but it's okay to say you've done all you can. It's not quitting to step back. When you write you have felt suicidal I think ths means you are at the end of your coping capacity - please do not ignore your own warning signs. Put yourself first - it's absolutely okay to do that.

Thank you for the responses above.

Caring for him is about the only contribution I make in this world. I got on SSDI a few years ago (based on chronically recurring depression with anxiety,) so I don't work. I don't have kids and grandkids to focus on. A lot of the time, I feel I do a good job of looking after him, and that gives me a sense of purpose and accomplishment. I like having someone to love and care for. But he's never, ever, ever going to be a source of what I would need from him to make ours a relationship that builds me up. He doesn't know enough to even want to be. It's just beyond him and probably not even his fault that he lacks some of the basic capacities that distinguish grown-ups from children. It's like I adopted a handicapped child . . . even long before the dementia. Years ago, shortly after I became deeply involved with him, one of his adult children asked me. "How do you like baby-sitting?"

Thirteen years ago, a counselor on a crisis phone line sent cops to my house to take a loaded gun from me. I went into a partial hospitalization program where the psychiatrist running it said I was a narcissist who fed off of male attention. She said she wondered how my boyfriend put up with me. (I had told her that I had sought relationships with other men.) A year later was when I cut myself. I despaired of there being any help for me.

This juncture does feel like a crossroads for me. I don't want to go down either of the roads. I want to dig down and crawl into the ground underneath me.

I haven't slept in well over 24 hours. Long periods of insomnia keep happening to me. I wish I could fall asleep forever. Often my thoughts make me wish I could die to escape them. I used to feel very accepted and wanted by him. Not any more. I feel like I'm just here to take out the trash, give him his meals, drive him to medical appointments, change the TV station, etc.

If I sleep all the rest of this day, I don't care. If I don't even visit him in the hospital today, I don't care.

Oh Rose,

I'm glad you got some off you're chest. I don't blame you for wanting to just sleep. Your mind is telling you to do so..... do it !

Everyone has a breaking point and I fear yours is coming , coming quickly.

Many hugs, be kind to yourself. Kind of like the airplane deal ... put your mask on first so that you can help others.

Rose you might need a break for few days at least. If he is in a hospital, he isn't abandoned.

If I may suggest, after he passes (sorry but that's a reality so you do something that would give you sense of purpose such as: volunteer even if few hours.

I don't know your age but if you are physically capable. It would keep you busy and give rewarding feeling and/or take on a small part time job. It would get you out of the house and would make you feel like you make a difference.

I used to volunteer at homeless shelters (have no time right now), and you can do it pretty much daily if you want. Boy, did it put my life in to perspective. Plus it made me so tired that I actually wanted to be home alone to rest after. I volunteered every holiday to. Christmas, new year eve etc or get part time job, that would bring extra money too. Something with people. Busy place etc

Sorry I am practical person and my advice typically is practical in nature. I apologize if I upset you if it's not what you need

Rose, your contributions here and legion and highly valued by me and, I know, by many many others here.

((((Rose))))

As my stepdad was on his deathbed, he encouraged my mom to get out of the house and find herself.
He was bedridden those last 10months in their home. My gram came and I came to be there, as well as, having nurses come into their home. He was 46.
Gosh he was practically in tears sometimes if he was curt with her. He said being in pain as he was, he didn't feel himself, but it was no excuse.

I say let him head to rehab. Give yourself some time. I'm so sorry that it's hard. And maybe your own pain creates a blindspot to those darker brooding moods?

I thank you for these responses. I appreciate your words and I agree with your suggestions and advice. Years ago I volunteered at a women's shelter and at a church. I like being involved in something constructive. For a good 4 years, meeting his needs has seemed all-consuming of my time and energy. I have thought that, later when I am alone, I can pick from many options in my community to do something useful. I just hope I can make myself care enough and won't have deteriorated too much. I have reasonable health. I don't feel as on-the-ball as when I held demanding jobs.

I went over to see him this evening. He sure doesn't look like he's on his way to the hereafter. But he has become a big behavior challenge to the staff. They said he tried to hit someone earlier this afternoon. That validates me saying that he can be quite a handful. He told me to take him home - immediately. He was confused and didn't even know he was in a hospital. He said, "Let's go right now . . . or else, get out. I don't want you here." I'm not personalizing that at all. They have a "sitter" watching him because he keeps trying to either pull out the I/V, or get up to walk, even though he lacks the strength to stand up. My trying to gently calm him down just got him more agitated. So I left. Clearly I could not cope with him at home, as he is now. They are recommending he go to a rehab facility next. I think that's the best bet. But, tomorrow, he doesn't have to go anywhere. So that buys a little more time. He may improve mentally and agree to a rational plan.

I miss him being here with me. I'm tired and going to sleep. That's all I want to do right now.

Thank you, each and all. You are generous with kind words, and the posts above are appreciated.

I am glad he still qualifies for professional care, and for your sake, hope it stays that way. I have seen how exhausted and depleted end of life care can be. Your depression has been telling you that something has to give. There is something inside of you saying you can't continue to care for this man. If you are asked again to take him home and care for him, for your own sake, you need to say no. You still have a lot to offer but just need time to recover so you can begin a new chapter in your life. Listen to what your body is telling you--you may need an entire year of rest (or even two years!) and self reflection in order to begin again. None of us are tired of hearing about your struggles. Sometimes we need to tell our stories multiple times in order to process what we have been through. PC is the perfect place for this. If you put yourself first--there is a chance you can recover from this terrible period in your life. It's not all on you--it's the terrible stresses you have been going through!

I'm going to keep it short and sweet.

Rose, YOU MATTER.

I am very much helped by the understanding and encouragement I have received here. I am getting a reasonable amount of sleep, though, as the time stamp shows, I awaken in the middle of the night. So tommorrow maybe I will have the energy to visit some rehab facilities and pick one out for him.

Over the course of the last few years, I've envisioned caring for him and what would be involved. I thought I had anticipated how everything would be. But reality has a way of taking unforeseen twists and turns, no matter how well I thought I had considered what could happen. My own responses to him range back and forth over a spectrum from devotion to exasperation. Last night, I found myself loving him and glad that he seems to have no physical pain. The joy on his face when I walked into his hospital room was touching. I do still feel loved by him. I can't make everything all better for him, though he seems to think I can work magic. He is brave in his own way. We had some smiles together, even though he was confused and fighting reality. The staff at the hospital has been nice to both of us.

I hope I can sleep some more. I don't feel so overwhelmed now.

Thank you all for your wise and generous words.

Just wanted to tell you that I think you're wonderful.

I'm back up because I'm too awake to stay in bed. (It's 5 a.m.) I had enough sleep.

Now the title of my thread seems strange to me and untrue. That's the cycle I go through, recurringly. I get fed up and exasperated with him and feel ready to drop him off in any facility that will take him. After a few days of thinking I've had it, that feeling of being depleted evaporates, and I get a second wind. From where that renewed sense of commitment comes I have no idea. But, now, I don't feel the least bit mad at him, or hurt by him. I don't want to escape anything. Most of the time he's been awfully patient with his loss of mobility. He has never whined about his loss of health, or said "Why me?" I admire him for having a combination of courage and acceptance that makes him grateful to wake up every morning. I wish my attitude toward life was half as good.

So my melt down has blown over, and now I feel ready to cope with what comes next. My mission, now, is to find the best rehab that will take him. And, contrary to how I felt the past few days, I now want to be involved in his care. It doesn't seem too heavy a burden that I want to distance myself from. But I do need to be realistic about what is doable by me and what I need to let others do.

A pdoc told me, after six years of knowing me, that he thought I was bipolar, based on me having some extreme reactions to hard challenges. I don't know what name to give it, but, when I get stressed, I do have very wide mood swings. How a situation looks to me changes radically, as I try to adapt to a higher level of demand on my ability to cope. I freak out and get mad and hysterical. Then, eventually, I settle down into a strategy that I figure out. But I seem to go through enormous emotional upset, trying to stabilize. Stability comes, but only after I bounce around with extreme emotion. Now I'm stable. This will last until I get destabilized again. Then I'll be transiently nuts, until I calm down once again. Going in and out of emotional crisis frequently, like that, is a sign of poor emotional health, and it further undermines emotional health. I tend to think it was a failure by me to mature on some front. It came across to that doctor as intense irritability that I guess they now interpret as a form of mania. Whatever it is, so-called "mood stabilizing" drugs (which I tried) did not help me at all.

Being able to maintain some semblance of mental equilibrium really is necessary for life to feel manageable.

Outside of any pre-existing MH concerns I think anyone would be struggling with the situation you are describing.

I have written this before but the emotional rollercoaster you describe is one I have seen many care-givers of people who have dementia go through. It is an extremely hard experience exactly because of the love you have for the person who is going through these changes in behaviour.

You deserve and need all the support you can get - if you can seek out an in person support group for care-givers of those with dementia in your area while he is cared for at this time that would probably be very helpful.

Dear Rose
My situation is of course not the same as yours... as everyone's experience is completely unique, but I do feel some empathy with what you are going through.

I think the cycle that you mention, of getting exasperated and wanting to 'drop him off in any facility that will take him' and then a few days later, finding the strength to somehow carry on for a bit longer, is totally normal and dare I say it, understandable.... ! I know I have been in that situation on more than one occasion...

We sometimes choose to take on a caring role, and sometimes it just 'happens' without our (conscious) knowledge or even our consent.... we just kind of morph into it. But, I remember you saying that you had previously been a professional paid carer, so perhaps your experience was different and you went into it with your eyes wide open. However, the lived experience of caring for a 'stranger' or 'employer' is (at least in my experience) quite different from caring for someone we are emotionally involved with.

For that reason, it's that I believe mood stabilising drugs won't be effective.... because it isn't your mood that is unstable, but your situation. When you get to that point of "equilibrium" you feel able to cope again, until the next destabilisation occurs.

I know, because I am / have been there.

It's a tough road to walk, and there is no 'right' answer; just whatever feels right for you. I know how much of a cop out that sounds, but it is true. At the end of the day, only you can decide what is right for you and your partner, and how much you can/are willing to cope with.

I wish you all the very best - from one who knows.
E. xx

Thanks for these very understanding posts. I am much better now. Really, I feel fine . . . like I woke from a bad dream. I found a really nice rehab facility, but don't know that I'll get him in there.

I devoted the day to him and his situation. He is recovering a lot. He's mentally clearer and cooperating very well with staff. I showered him with warmth and support. He seemed so content. Took him on a wheelchair ride to buy snacks at the commissary. Brought him in takeout food . . . and snacks from home. Then, this eve, he got annoyed at me for something stupid and snapped at me like I couldn't believe. Again, in front of a nursing assistant, just growled at me like he could barely stand to have me around. This being barked at and talked to like he can't stand me is too hard to take. It feels so rejecting. He used to do this many years ago when he was drinking. Today he had a very good appetite, so I can't say he's in the throes of being awfully sick. I've cut him so much slack for his dementia, but I can't find any reason to stay around someone who keeps being so hurtful as often as he's doing it. I had just recovered from the last hurt on Sunday eve. Today, Wed., I get it again. At the rate of taking a sucker punch to my heart every 3rd night, I will become a horribly depressed blob of nothing in no time.

Now I'm back telling myself I need to seriously think more about stepping out of this role I've been in. Maybe I'm too thin-skinned, but these upsets I go through with him are just coming too fast for me to cope with. I'm coming to feel he just dislikes me too much. It may be that he always has. I can't keep acting lovingly toward someone who makes me feel so disliked. He needs me and wants me in the role I've filled. But, if he is just tolerating me because of the service I provide him, then I do not want to be with this man.

Rose you are (to my mind) very hard on yourself, you say you are maybe thin skinned but who wouldn't be feeling hurt and disoriented by his behaviour?

I think you are also being triggered to an earlier unhappy time as his current behaviour is reminding you of how he was and made you feel back when he was drinking heavily and being abusive towards you. That is another dimension you are coping with in addition to his current illness.

It's not surprising you see similarities as both alcohol and dementia affect the inhibitions and reasoning - that is most likely what you are seeing in him now. How he is behaving towards you now sounds quite typical of dementia.

Alcoholics do not have relationships, they take hostages. You have proved yourself many times over and you have no obligation to accept crucifixion from him.

I think I'm going to call his social worker and tell her I'm in kind of a crisis. I hate to make an irrevocable decision that I'll end up being sorry for. But I hate to stay in a set of circumstances that are unhealthy for me . . . and that are likely to get worse and worse.

I want to act as a responsible adult. There are ways of relinquishing all or part of a responsibility that are mature and appropriate. And there are ways of running away that are childish. I have some history of doing the latter.

I feel pretty calm, though I've been crying on and off. But I also know that I have years of built up resentment that may be driving my thought processes at the moment.

Maybe I'll go back to bed and do nothing for today. (That doesn't sound very adult, does it?)

leejosepho - that was a powerful message. I say to myself often: "Am I going to just keep sacrificing myself and my life on an altar to this guy?" Then I think, "Yeah, like you've got something better to do." (If I stop caring for him, I might just go to bed for the rest of my life. This little "job" I've given myself gets me up and "doing" and someone benefits from it.)

It's the not feeling loved that is hard. It's the contempt and disdain in his voice that is hard to hear. He probably does love me . . . after a fashion . . . within the scope of his limited capacities that always were pretty limited. But he finds me so dislikable. Well . . . he can join the crowd. So - yes - that's another thing I'm being triggered back to.

Sometimes I really don't even want to keep living. And that's not melodrama.

Rose going to bed for the rest of the day is completely okay if you are worn out mentally and physically.

I can tell from your posts you are a very intelligent woman with a lot to give, and you have posted before about your nursing career - you sound very able. Right now though you sound worn out, that is understandable.

I think it's a good idea to talk to his social worker, they tend to assume everything is okay until they here otherwise (least that' how it is in UK), let them know things are not okay.