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.
I am a former "rescuer" and have learned over time to stay away from those people. Because the "old me" would try to rescue them and then eventually get angry at them when they didn't get better with my rescuing. Now I know when that behavior starts, I leave or change the subject. I can't fix anyone else. I can only fix myself.
I would get some marital counseling if I were you and if your wife refused to do her part to improve her situation (through joint counseling and medical help), I'd get out of the marriage. If you want to stay in the marriage, I'd say DON'T retire. That's your respite right now. If you're with her 24/7, it will make you even angrier.
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..
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.
To Ignorotic: Yes, “toxic” is the right word for this situation. In the past few months I’ve run across several descriptions of toxic relationships, which hit way too close to home. One used the colorful phrase “energy vampire” which also fits. For many years, I’ve been doing my best to not engage, which naturally elicits the comment from my wife that I’m terrible at communicating. Well, yeah, with someone like her I am. Who wants to communicate with someone whose likely response is going to be something negative?
To blannie: in years past, we’ve tried marital counseling a couple of times, and each time it was one session and done as far as my wife was concerned since, of course, she thought the problems were all with me! At this point, though, I think it’s too late for anything like that to be useful. Her very real health problems are too numerous and too serious. I have been going to a counselor on my own for several years; it’s kind of helpful, sometimes, but certainly not a magical solution.
To the several people who mentioned divorce: A few years ago I did talk with two different local lawyers, and they were both pretty pessimistic about how a court might view a settlement, given my wife’s situation, i.e., I’d get hit hard. For whatever reason(s) I also have an ethical (not religious, since I’m not a follower of any religion) problem with divorce. It does seem too much like abandoning her, throwing her out—especially since there’s no one in her family who could take her in. I really do feel “stuck”—being responsible for taking care of someone who won’t take any responsibility for herself.
To emjo: you made a number of good observations/suggestions. Perhaps you’re right that more frequent respites, if they could be arranged, might be helpful. We’ve contemplated the idea of trying to find a live-in caregiver, but haven’t tried it yet; it does seem awfully risky. The idea of separate residences won’t work; my wife’s health is so bad that she is totally incapable of taking care of herself. I HAVE told her a number of times that I’m worn out from taking care of her, but I didn’t go into any details about it. I’m s big-time conflict-avoider and have a lot of trouble setting boundaries, except for the one about not retiring (she hassled me about that again just this morning. Actually, I’d LIKE to retire and would do so, if I thought my life would be better that way, which it most certainly would not be.) I also appreciate your reference to the site on narcissism. So far, I’ve only glanced at it, but will do a lot more exploration there soon.
Just recently, in an effort to get something/someone good in my life, I tried to have an affair (which I’ve never done in our entire marriage) but was turned down for a variety of good reasons. In retrospect, this was probably for the best, because the added stress would likely have more than offset any good feelings I might have gotten from an outside relationship. Does anyone in the Agingcare community have any thoughts about or experience with with this kind of thing? At the moment, I’m still open to the idea, though I don’t have any “candidates” in mind.
Again, my sincere thanks for all who responded. You’ve given me some different angles to contemplate. I’m going to have this sink in and ferment in my brain for a little while. Maybe some more definite course of action will emerge. Of course, additional comments and suggestions are always welcome (smile)!
Consider that you might work out an agreement with your wife with the help of her lawyer and your lawyer; you put money in a trust for her care. You're not abandoning her, but neither can you or should you, be her sole caregiver. You don't mention what her illnesses are, but that she's an invalid. What illnesses? Are you involved with talking to her doctors about what's being done, what CAN be done to ameliorate her suffering, and yours. Is she terminally ill; if so, hospice can step in. Not trying to bully you, but I want to get a clearer picture and make sure that we all are not missing something. I'm not a big believer in manipulation, I usually believe that people do things because they have to other way of dealing with them, but your wife sounds like a manipulator.
My therapist is a counselor, not one who can prescribe meds. My doctor did have me try an antidepressant a few years ago, and it didn’t do anything for me. My depression is very situational; when I’m not home, I’m not depressed. I don’t know about group sessions in my area.
My wife’s illnesses: I did mention COPD, which causes her breathing problems, and diabetes which has caused peripheral neuropathy that in turn has caused her to fall a number of times, further injuring her ankles which already have major lymphedema in both legs which no doctor has, yet, come up with a method of treating. She can walk only a very few steps without assistance, basically enough to get to and from the nearby bathroom. Her shoulders are both very fragile, as a result of earlier dislocations/surgeries and breaks. Thirteen years ago she suffered two compressed vertebrae from a fall. More than twenty-five years ago she was diagnosed with major depression, which has only gotten MUCH worse over time. Her psychiatrist’s treatment consists of a brief appointment every few months, and the prescription of an antidepressant and an anti-anxiety drug. She has been taking opiates for pain, but her doctor is weaning her off of them. When they’re totally gone, within only a week or two, I shudder to think what her behavior will be like. I may have missed one or two things, but that’s more than enough. I am sure that she is not faking any of these ailments; they are real and verifiable.
As to the idea of a trust of some sort, the cost of AL/NH care is scary, but I’d be willing to try to figure out a way to pay for it (we’re not rich, but are too well off to qualify for any kind of outside assistance), but she’d have to be willing to do it. I’ve been told that she can’t be sent there against her will unless she’s an imminent danger to herself or others, which she is not.
Does this give you a clearer picture of the situation?
I hope you find a way to manage your situation that makes your life better. Let us know how things are going!
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!
1. Don’t try and do it all on your own: It is a common occurrence among Alzheimer’s caregivers to try and go it alone, but you must be prepared to accept help from others. Realize that help from your friends and family will lessen the weight of your own tasks and decrease the overwhelming stress. Consider contracting a non-medical caregiver and realize that you do not care any less about your loved one if you accept or actively seek out assistance.
2. Knowledge is power: Understanding your loved one’s condition will undoubtedly aid in determining the care you will give. Be familiar with each stage of their disease, which one they are in and which appropriate care tips and techniques apply in order to find success through an already difficult situation. That understanding will surely serve as a platform for becoming successful Alzheimer’s caregivers.
3. Don’t throw your own needs to the wayside: Taking care of your own needs doesn’t need to be and shouldn’t be sacrificed in order to be an effective caregiver. Did you know that Alzheimer’s and dementia caregivers rack up billions of their own medical bills each year? With this in mind it is especially important to make sure you are keeping yourself healthy and active both as a caregiver and as a human being. Be sure to do something for yourself on a regular basis and understand that while you care for your loved one, you are allowed to focus on your own health and happiness as well.
Keep in mind that these ideas are only the tip of the iceberg and each situation will be unique. Alzheimer’s caregivers undergo an immense amount of stress and while it is a heavy burden to bear, these tips may help lessen your load.
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.
ba8alou, the antidepressant I tried was Bupropion, a pretty mild one, I believe. At any rate, I didn't notice any changes for good or ill so I quit it after a few months. I don't really want to take anything like that, all the more since the several my wife has used haven't provided any obvious help to her. I take clonazepam sometime to help with sleep.
My wife has also just started with an occupational therapist, who has a lot of experience with lymphedema. It sounds like maybe this therapist might be able to get hold of some compression paraphernalia that can help. As to disability, my wife has been on disability retirement from the state government system for many years; she's not old enough for Social Security yet, and we have too much money to qualify for any of the low-income programs. She does have a wheelchair which we use when we go out--usually only for medical appointments.
Her statement about smoking: the doctor just smiled knowingly, like he'd heard that line before. Likewise, her regular doctor has had similar reactions when the topic has come up. My wife makes no bones about the fact that she isn't going to quit--though she has cut down somewhat of late--and this issue has been a major source of contention between us the whole time we've been married. No sense getting into useless confrontations about it.
I have made it as clear as I can to my wife's psychiatric nurse, who makes weekly visits, that I am getting near the end of my rope, and have urged her to try to convince my wife that we need some alternate form of care. Given my wife's willful, volatile nature, this is a slow process, at best.
ignorotic, I think the people she talks to have a pretty good idea of the real situation, however she may try to slant it to make herself look good. I'm not too worried about them believing her lies and distortions. Most of her family is "on my side"--for all the good that does. And, Yes, I know there will be life later on; I think about that a good bit and am as ready for it as is reasonably possible.
Again, thanks to all who responded, and will respond!