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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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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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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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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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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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Have you seen a divorce lawyer?

That's where I would start.
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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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"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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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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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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