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We have been married for 47 years and I have been her sole caregiver for 10 years. She is wheelchair bound and is no longer on a home ventilator which makes my job "easier". Very controlling and micro-manages everything I do. She will not allow outside help and has become a very unpleasant person to be around. I refer to her as a black-hole that sucks the joy from everything I know. Sorry for being so blunt, but I feel totally abused as a caregiver! I have developed back, neck, and shoulder issues and she refuses to allow me to acquire adaptive equipment to aid me in her daily care. I need guidance!

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Short answer yes.

Your wife has the ability to choose where she lives (within reason) & may prefer you to others.

However, it is your choice to provide hands-on care or not.

Therefore, if you decide for 1 month you will be away, on a fishing trip, staying in a cabin, you can. As caregiver you have responsibilities to line up replacement care for your wife. Her choices will be;
A. Aide to your home, or
B. Move into an aged care home.
Of course these choices must align with the *real world* too... what is available & affordable in your area.

** Enslave spouse is not an option **

Unfortunately this is common - that the disabled person's needs just sort of take over. She trusts YOU. She wants YOU. Take it as a compliment but go on & arrange what you need. YOUR needs matter too.

Burnout is real & dangerous.

Another point: Imagine working as a nurse or aide for a moment. If the client said "carry me" or "lift me" & refused any required standing aid or lifting machine. The worker says NO. Work health & safety laws protect the worker. You have spine problems already.
That bulging disc is telling you to change what you do. Please listen to it.
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AbusedCG Feb 2023
I am certain I have become my own worst enemy. I have set a precedent and not stood firm to my own convictions. I am exceeding my limitations and ignoring the warning signs. I have heard stories about battered women who "love" and won't leave their abuser. I used to wonder how it could ever come to that but I now understand. Everyone else sees it. I need to find it within myself to take action and try to keep love in the equation.
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Your wife, according to your profile does not have dementia. So I am assuming that she is fully cognizant and can make decisions. My answer is based on that.
When you have a relaxed or less stressed moment sit down with her and say...
"I know you need help, I know you want my help but I am exhausted and I need to take care of myself."
"If I continue this way I am going to hurt myself and then we will both need someone to help us and I don't want that to happen any more than you do."
"You have a choice, we can have someone come in and help out or you can go to an Assisted Living facility for a week so I can take care of myself"
"And going forward we have to have someone come in for 3 or 4 hours a few days a week to help ME."
"I am also going to talk to your doctor and have equipment ordered so that I can more SAFELY care for you. I do not want you to get hurt when I am caring for you and I do not want to get hurt myself."
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AbusedCG Feb 2023
My wife suffers from PLS, a variant of ALS. Mostly upper motor neuron issues with swallowing, speech, breathing, balance, and muscle contractures. Muscle control is a huge challenge. She will live a long lifespan unlike ALS. She is extremely intelligent and spent 14 years in the medical profession as an X-Ray Technologist and Mammographer. I have worked most of my career as a Mechanical Design Engineer in various industries. She is extremely headstrong and controlling. Extended families and our own children want nothing to do with her care. Caretakers that were hired many years ago quit and went home in tears never to return. Agencies have called and said they will not staff her needs. That was nearly 8 years ago and in my opinion, she's gotten worse.
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I am assuming you are her POA, and her next of kin, perhaps her ONLY kin, so yes you can.
I just passed another book on Boundaries at the library today; looked good and I wish I could remember the name. Then there is of course Henry Cloud's good original one called simply, Boundaries.
AbusedCG, you simply have to set down the law for your wife.
Do it gently and with love, and without expectations, because she is gonna go off on you with tears or anger or both. It's a new way of thinking and being and she is dependent on the safety of habitual ways of being.
Tell her something like this:
"Honey, I love you. That's why I am still here. But I am breaking down now with needs and very honestly I am afraid I could get so broken and overwhelmed that I could DIE. That wouldn't help you at all. I need a break, and now I am going to take a break. I know this will hurt you and make you unhappy, but I have to take care of myself for BOTH OF US. You have a good cry or you have a good rant or you do whatever you want to do about it, but I have to have some time off and I am going to take it. And I am going to come back to you with presents and with my love and strength restored".
What else can your possibly do, CG? You MUST take care of yourself for without you your wife will be alone. She may not fully understand that, and I know it will make her fearful if you leave, but not everything can be fixed so that everyone is happy all the time. Your wife will just have to endure the pain of your being gone a while.
My very best out to you.
(do remind her that even a hospitalization for you would put her in respite for quite some time)
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AbusedCG Feb 2023
Thank you for your kind words and thoughts! Every time we've sat down together to address the "elephant in the room", it has ended poorly. I lose my temper and patience, and the "loving approach" flies out the window. We have been to marriage counseling 4 times in 6 years and when they tell her I need a break and she needs to be more loving and understanding, the sessions end by her hand. Denial coupled with fear. I truly understand her perspective but have arrived at fight or flight.
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Your wife is wheelchair bound and just off a home vent......she certainly doesn't seem capable of preventing you from acquiring medical equipment to use with her at home or of much else, for that matter. She says No and you say Okay honey???? I'd give her a choice: we do things MY way now or I quit this unpaid job as your indentured servant. You can then hire in whoever you want to care for you 24/7 or move into Skilled Nursing.

Its unfortunate and sad that she's in such poor health. But it does not give her the right to suck you dry and usurp your life. You're allowing it. Put your foot down HARD now with this woman and TELL her how things will work moving forward, including your periodic scheduled respite where she goes into an AL or SNF to live while you're gone. This will also break her of the nonsense that she'll only allow you to care for her. The selfishness of such a statement is mind bending to me. As if you owe her this 24/7/365 care without break. Ridiculous. Also remind her if you're dead, who'll care for her THEN? No joke. Don't be a statistic.

My father married a woman like your wife. He spent 68 years getting browbeat and henpecked into submission. Bc he allowed it. Toward the end of his life he was SO angry and resentful of her, he was ready to get divorced.

You have 21 fewer years of marital bliss than my dad. It's not too late to stand up for yourself NOW. And tell her she should be grateful for all you do rather than controlling and miserable. You can't change HER but you can change to how YOU respond to her tyranny.

I hope you do.
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Dupedwife Feb 2023
You hit the nail right on the head. Great advice!
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You have options. If there is really no love there, you can get a divorce. You can tell her if she doesn't allow aides and equipment to help care for her, she will need to go to a Nursing Home because you cannot do it anymore. She needs you more than you need her. She needs to know this. You can walk right out that door and call APS and report her as a vulnerable adult. Then what happens, they take over her life. The State assigns a guardian and they make decisions for her.

Next time she is hospitalized, especially Rehab, ask for a 24/7 evail. If they say she needs 24/7 care, then you refuse to take her home. Tell her you can no longer care for her physically and she won't help. Have her transferred to LTC. Then u get to an elder lawyer and have your assets split. Her split will go to her care. When that runs out you apply for Medicaid. At that point u become the Community Spouse and stay in the home, and have a car and enough of your monthly income to live on.

You can set up someone to watch ur wife 24/7 for 2 weeks. Just tell her this is how its going to be. You need a break from her.
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OMG!!! You really are abused. You should not let her dictate your life, your health, your sanity, your everything.

She has NO RIGHT to demand you to be her 24/7 slave. Yes, you're her slave.

And YOU, YOU should STOP OBEYING her this very minute.

Do what you need to do, and if she doesn't like it, TOO BAD. Beggars can't be choosers.
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Unless she can pin you into the house then no. Just hire help and go. Or if she is on hospice they have respite options and one of the reasons you can use it is exactly what you're dealing with. Burnout is not safe for you and not safe for the patient.
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Have you seen a divorce lawyer?

That's where I would start.
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I would get a divorce lawyer. No one deserves this kind of treatment. Choose flight and I hope you find happiness.
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You're abused and she's a witch. You convinced me, but how did this happen to you? It should never happen. But since it has....

You have the power in this relationship. You matter. If you want a vacation, go and have a good time. Of course you'll make sure she has care while you're gone. If she has a hissy fit, you won't hear it because you're at a resort and have turned off your phone. By the time you return, you'll have a clear idea of what you want to do going forward.

If you're stuck at the "in sickness and in health" vow that you took when you married this woman, please realize that as soon as abuse entered the picture, she was not "cherishing" or "loving" you. She'd violated a marriage vow herself. She's not "comfort and keeping" you, she's not "honoring you." She is mean, selfish, overentitled and negatively affecting your health. Did you ever think about this: the love we get in a marriage is conditional. It depends on the other person being faithful, supportive, kind and a whole slew of other qualities that she's not showing you.

Love we get from a pet is unconditional. So right after you consult the divorce lawyer, look into getting a cocker spaniel. I promise you that in a year or so, you'll not only be free of this harridan, but you'll feel more loved than you did in the marriage. There are probably a lot of sweet ladies out there who would be delighted to make your acquaintance.
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“….refuses to allow me….” THERE’S a red flag if I’ve ever seen one!

If she’s given a reasonable selection of choices to provide care for her, and she’s cognitively intact, it’s her job to do for herself as she wants.

What consequences are you afraid of if you tell her what you’re planning to do? Are you afraid she’ll get mad? Yell? Cut off your allowance?

I can’t think of too many “punishments” that she can impose that could make your life as bad as it is now. My bottom line is always “balance”. Where’s yours?
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First I think you need to go to the doctor for yourself. You have your own medical issues and are experiencing physical pain which is your body warning you and it needs to be addressed by a doctor as does your mental health. Even a bad doctor I think is going to tell you you need your own time away, help from others (she should be able to get professional assistance paid for given her disability) and equipment to help lighten your load. That will be your doctor talking not you since you saying this doesn’t seem to work with either of you. Then as it sounds like you do have children and family who care but know that they can’t be the caregivers, can you enlist them to help get your point across? The subject may just be too heated for you and your wife now and while there is no guarantee she won’t be just as unreceptive to them maybe multiple family members going to her because they care about you to say they are worried about you will at least put enough chinks in her armor to tire her or help it set in that something has to give. As you said she’s smart and while she has been smart enough to know how to prevent change she may also be smart enough to know that there is going to be change now and she better participate before the decision is made without her.

Most importantly you need to keep reminding yourself to stand firm, taking care of yourself is taking care of your wife wether or not she can see that. Taking care of yourself is also taking care of your children, imagine how helpless and frustrated they must feel watching you break from the weight, they obviously know all about the weight given they know better than to help do the actual caregiving. What will happen to your wife should you get sick or worse and what does that place on them? You can look at it a number of ways but there isn’t anyone negatively affected by you taking care of yourself. Sometimes taking care of ourselves is the hardest thing to do. You don’t have to change your heart to do that just your resolve. I think a lot of us are with you and sending you strength.
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What we did for dealing with my 93 yr old father-in-law who has Parkinsons. We completely relate to the ongoing mental & physical struggles. Contact her Dr & tell him what you just said & ask him or her to refer her to hospice help. It may be beneficial to go online & print out a medical POA form for future directives. However, if the Dr agrees to hospice it would relieve stress from you both. It doesn't mean one is dying to be on hospice. Just that their condition is no longer manageable by yourself alone. They do not have to come out all the time, or they can...you decide on a schedule. It allows you to have some sort of relationship with her instead of getting upset when she doesn't comply. Good luck! 🙏
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lealonnie1 Feb 2023
How does hiring hospice 'allows you to have some sort of relationship with her instead of getting upset when she doesn't comply." ????? That makes no sense to me. The OP himself can call a hospice company directly and request an evaluation; he does not need the doctor to 'agree' to anything. If hospice does come on board, how does that relieve HIM of this 24/7/365 indentured servant schedule? B/c a nurse, CNA and SW and chaplain come in once a week or whatever to visit his wife??? You can never get hospice to come out 'all the time' under any circumstances! Hospice provides nothing much at ALL in the way of extra help for people living at home, aside from a bath 2x a week from a CNA. This gentleman needs to put his foot down HARD and stand up for HIMSELF now, getting the respite he needs before HE breaks down.
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"I need to find it within myself to take action and try to keep love in the equation."

Keep love in the equation...

Saying "no, I can't do this anymore" to my mom was a very hard thing to do. But I KNEW that living alone was no longer safe for her.

Saying "I can't do this anymore" to my husbamd is going to be terribly hard, too. But I know that if I crash and burn caring for him, he'll have no advocacy.

So I know I will have to do it, someday.

I hope that you can see your way clear to pull back
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NeedHelpWithMom Feb 2023
So honest! Well said, Barb.
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I feel your pain. I don’t know how you can continue on like this. You’re going to burn out.

You know that you do not deserve to be treated this way or you wouldn’t have created this thread.

Have you figured out exactly why you are tolerant of this behavior from your wife?

You stressed how long that you have been married. Do you feel obligated to her because of being married for many years? Would you feel guilty if you left? You’re not guilty of harming her. You are being harmed by being taken advantage of!

Do you believe that you will have a very happy 50th wedding anniversary?

I am married over forty years as well. I’m with my husband because I dearly love him. You say that your wife doesn’t love or appreciate you. She “needs” you.

Someone “needing” you, in my opinion isn’t a good reason to stay married. Personally, I would rather be married for 5 or 10 years in a good marriage rather than 50 years of a horrible marriage.

Take some time to seriously consider why you have continued to stay in an abusive relationship.

In the meantime, hire someone else and walk out of the door. Buy yourself a drink (if you drink) and relax! You deserve it.
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Take the time you need.

Start now, and do it daily. But come home to give her dinner and assist her to bed.


Unless she needs 24/7 supervision, you leave the house daily for 4-8 hours.
Let her object. Scream, yell. If she goes off call 911 to take her for a behavioral evaluation and medicine review.

My guess is that she can do more for herself than you know. You might even be enabling her to stay this way. A bully can be managed with skills you don't yet have. Go hang out at the local Senior Center, have a look-see. They have classes.

Still, do it all with kindness and try not to see her as the enemy.
It seems like she is the enemy, doesn't it?
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CG, I just read your profile. It is hard enough to care for someone that appreciates the effort and loves you. This woman does not love you, she is a stranger to you. Don't allow her to treat you this way any longer. I would see a divorce attorney. You deserve happiness. If she won't allow someone else to care for her, let her care for herself. That makes me very curious how much she could do for herself if she would bother to try and learn.

Has she had PT or OT lately? I would certainly get that set up. No she does not have a choice if she even wants a chance at you staying. Otherwise, leave. Call APS, tell them the situation that you are abused and will not take it any longer and that leaving may very well leave a vulnerable person there alone. She cannot force you to care for her or deny you respite.
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ACG: What do you want to see happen?
- For her to suddenly grow feelings for your sacrifice and to help you to help her with adaptive equipment or respite? Truthfully, will this happen?
- For her to stop controlling and micro-managing? Truthfully, will this happen?

You don't mention that she has mental issues that prevent her thinking rationally. If she does have her mental faculties, she can manage her own health care, with help from government services, including a vehicle to take her to and from medical appointments and shopping.

Ten years, ACG. It's long enough. You can't continue this way. Either you die of the stress or you leave. I recommend a consultation with a lawyer on how you proceed. I recommend a counselor (they can do this over the phone now) for your mental well being.

You've asked for guidance. I think you know your only option and that's to save yourself. I'm sorry and I hope you the better future. You deserve better.
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You feel like you're totally being abused as a caregiver because you are being abused.
Since when does the needy invalid who has to have everything done for them get to call the shots and refuse to "allow" outside caregivers?
You don't have to tolerate that crap.
Her "allowing" special equipment to help with her care needs is not her decision to make. You are the one who has to do for her. You are the one who decides what and who comes into your house that makes your job as her caregiver easier.
Your wife won't "allow" you to have a respite break for a couple of weeks?
Are you a grown man? I think you are so maybe it's time to take them out of her handbag and TELL her how it's going to go. Not ask her.
Medicare pays for a certain number of respite days in a facility. So she can be placed for I believe ten days respite a year.
Or you can hire a caregiver to come and stay in the home for a couple of weeks while you go to Hawaii or Paris or wherever you want to take your vacation break.
The choice you give your wife is either the nursing home for 'X' number or days, or a live-in caregiver for 'X' number of days,
In the meantime, you bring in whatever devices you need and hire some homecare help so you can have a life outside of caregiving.
Whether or not your wife "allows" it is really irrelevant. She will have to accept it. If she doesn't she should be well aware that you will put her in a nursing home.
This usually gets a person to start being reasonable.
Caregiving is hard. It's also hard to be the person who needs to be cared for but that does not justify or excuse abusive behavior.
Do not tolerate your wife's abuse. You have earned my respect for sticking around taking care of your wife who is an ingrate and doesn't care about you.
My friend, bring in some hired homecare and find yourself a nice woman you can enjoy having a French lunch with. Ooh, la, la. I certainly would if either of my spouses behaved to me like yours does. SMH...
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AbusedCG Feb 2023
To the point and helpful. Thank you for giving me more options to think about.
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What kind of adaptive equipment do you need?

See your own doctor, as Medicare covers DME.
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You're not alone. My brother's wife has become more disabled, more controlling, more narcissistic, and more verbally and emotionally abusive over 30+ years. She has bipolar, borderline personality disorder, obesity and conditions of obesity, alcoholism, substance abuse, on multiple medications (including benzos, which make her more evil), and now she has thyroid disorder and Grave's disease. She has broken numerous bones (including back bone with full body brace for recovery) over the past 5 years. She uses a wheelchair and walker, can't transfer alone, can't bathe alone, can't drive anymore. Even when she was not physically disabled, she never grocery shopped, cooked, cleaned, or lifted a finger for any other household task like paying a utility bill. She sucks the life out of ME, even when I only see her a couple of times a year!
Some of my brother's coping methods are smoking, drinking, substance abuse, and overeating, so of course the stress has impacted him over the years.
You already know your wife will not change, so there are only two options. Stay, or leave.
If you have employment or other income, that makes it easier. Get yourself an affordable apartment, move in, change your phone number. Call a divorce attorney, estate attorney, and geriatric care manager. Sounds like you have grown kids, some together and some just hers. From your apartment, contact them and let them know they will have to step up and care for their mother somehow, in spite of their emotional and medical and financial problems, because you have moved out.

You could have a future without her. I wish my brother would do it, but he's too enmeshed. Obviously my brother has an emotional need to take care of someone, but that's not his ONLY need, and it's probably not your only need either.
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BurntCaregiver Feb 2023
@Beekee

People who have an emotional need to take care of someone else should do some volunteer work.
Or get a paying job as a companion to the elderly or as a babysitter.
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