I am the sole caregiver for my wife (aged 63), since for a variety of reasons her other family members are neither willing nor able to help at all. She's had a variety of health problems, both physical and mental, for most of our married life, and for about the past 6 years has been pretty much an invalid. In general, our marriage has not been ideal, but we’ve both been determined to make the best of it.
I'm still working full-time, mostly for the break it gives me from taking care of her. She keeps urging (i.e., nagging) me to retire, so I can be home to look after her all the time. I, and most everyone I talk to, know this would be disastrous for my health and well-being, and so ultimately for hers. But she just doesn't seem to understand that.
Most of her communication consists of whimpering and crying, moaning and groaning, complaining and criticizing. And occasional verbal abuse of me and others. She is extremely negative and critical about almost everyone and everything; she’s a black hole who absorbs most of whatever energy I have. I catch almost all of her flak because I’m almost the only “target” she has. She has done almost nothing to help improve her health; rather, she blames other people and expects them to fix it for her. She is also very intelligent, although in recent years both other people and I have noticed significant cognitive problems in her behavior, possibly the delayed results of a long ago brain injury.
The bottom line is that I just don’t want to be her caregiver any longer. I am tired of having my life dominated by her problems, a good portion of which are her own fault (COPD from 40+ years of smoking and diabetes from eating--i.e., demanding to eat--mostly junk.) I would like the chance to enjoy a few years of my life before my own inevitable health problems set in; I’m 66 and in decent health--at the moment. I have noticed myself gradually becoming more and more angry and resentful about this situation, especially since some, though certainly not all, of her health problems are the direct results of her own behavior:
So, what am I to do? Last summer, we tried having her stay in a well-regarded local nursing home so I could have a couple of weeks of respite to go visit friends and relatives. She couldn’t stand it, couldn’t stand not being in control of her environment (e.g., the nursing home took away her cigarettes and medications), with the result that she pitched a fit and convinced several people to help her move back home and stay with her while I was away. So, some kind of assisted living/nursing home situation seems to be out of the question.
Respite care for me is not really the solution either. Whenever I’ve been able to get away, the thought and action of having to come back “home” again is just so overwhelmingly depressing that it wipes out much of the benefit of the respite. Being away is like climbing up out of a cesspool or toxic waste pit and breathing fresh air and drinking clean water; coming back is like slipping down into the muck again. I am just worn down, depleted, burned out from dealing with this situation. I don’t know what to do. I have no family of my own to turn to, and don't want to unduly burden my friends with my woes. I just know I need to do SOMETHING and will welcome advice and suggestions from this online community. From reading other postings here, I know my situation is not nearly as bad as what a lot of other folks have to deal with, but it's bad enough all the same.
There were a few revelations that helped me take control of my life and detach from a toxic situation. You really have to think about this and commit to changing the situation, despite how bitter, resentful, and critical she gets. Keep in mind I don't mean you neglect your duties as a caregiver, but you have to turn a critical eye to what is reasonable, and what is simple whining and selfishness.
1. Negative people like this treat their problems like objects they find lying around; they pick the problem up, put it in a bag, and go about their day. They collect these problems and when they can, they drop the sack at your feet saying "look at these problems!" with the expectation that you will fix it all. They truly believe once they share their problems with you, they become your problems. As obvious as it seems, the solution is to stop making her problems your problems. Easy to say and hard to do, I know. Which leads to...
2. When the whining and complaining starts, DO NOT ENGAGE. Don't sympathize, don't argue or dispute, just do your best to be neutral and non-responsive. Any response you give just opens the door to further the conversation, whether you try to sympathize or disagree about her opinion. This was SO hard for me at first, since I had a lifetime of thinking I HAD to respond to the whining and bitching, no matter how ridiculous it was. The hardest was after a few situations where I gave the stonewall, she would ask "what do you think", and the only honest response was "it doesn't sound like my problem".
After enough time passes and she realizes the pity party is over, she will find someone else to bring her sack of problems to. You will, no doubt, be slandered to any and all who will give her audience. Just be mentally prepared for the storm, it will pass.
You say the you both have been determined to make the best of it, yet, from what you write, I don't see that effort on your wife's part. Maybe there is more to it. It appears that you are making most of the effort. Have you considered counselling?
There are several options, though you have already indicated that respite is not the answer for you. as you really are "done" with caregiving.
If staying were an option, ignorotic has given you good suggestions.
Because respite did not work one time does not mean it would not again. In any case you got a break while friends looked after her. Can that happen more often?
Can you arrange for caregivers to come in so you can build more of a life outside your home?
This is obviously a pretty unhealthy situation for you - the stress and the second hand smoke. Other have suggested divorce. Separation is another option.
If you are considering either of those, I think you would be wise to consult a lawyer regarding your financial responsibilities towards your wife. You do not indicate whether she has any money of her own.
I am tending to agree with others that you don't have much of a marriage, but preserving what you have may be important to you.
I know a couple who live in condos next door to one another. They are perfectly happy, but he is messy and she is tidy. Living next door to one another is their solution. I do think you need a "safe place" to call your own.
Have you told your wife outright that you are burned out and can't continue like this? I guess any useful dialogue with her is not likely, but you can set boundaries. She doesn't have to understand that, for instance, you continuing to work is good for you, but she can accept it. She sounds very self centered - perhaps narcissistic - so she will only see how things affect her. There is a website called daughtersofnarcissiticmothers which is useful for people in general who deal with a narcissists. If you google the phrase you will find information and other links.
Good luck and let us know how you are doing.
one final note; ive read a lot about mental illness / dysfunction and in nearly every case the only solution is a divorce simply because there is no rationinalizing with " stupid " . you will lose your own mind and thats not fair..
To ba8alou, she SAYS she wants to feel better, but her actions don't live up to it. In other words, she wants to feel better as long as she doesn't have to make any effort on her part. No, we're about 75 miles from the nearest big city. I agree about the antidepressant; I've not talked with the psychiatrist himself, but have had a number of conversations with a psychiatric nurse whom he assigned to her as a case worker. This nurse is just as frustrated as I am with my wife's unwillingness to do anything to help herself.
To ignorotic: amazing how people can be in such denial! Several years ago, during a doctor's appointment in which the topic of breathing difficulties came up, my wife made the incredible statement, "I've been smoking for 40 years and it hasn't bothered me yet." She is anything but a stupid person, but that is the dumbest thing I've ever heard her say!
To privatecare123: we can afford SOME private care for awhile. In fact, literally just yesterday we started with a home care aide who will come in for an hour 3 days a week (to start with) just to help my wife get to the bathroom, perhaps some hygiene, and other odds and ends. The cost of more extensive private care long-term would be a frightening thing to contemplate. As to compression stockings, we've bought several pair, none of which fit. A nurse who has experience with lymphedema is scheduled to visit next week.
Each one of these things is minor by itself, but the mass of them is just wearing me down!
I aged 20 years in the actual span of 8 years trying to care for my aunt. It wasn't just her negativity, it was having to defend myself constantly to the people she lied to about me. And the reality that for every person who had the courage to ask me about the lies, there were probably 10 others that just assumed she was telling the truth, and that I was a bad caregiver, and a bad person.
There will be life after she passes on, and you have to think about what that life will be like, and how you want to prepare for it.
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