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!
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.
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."
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)
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.
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.
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.
That's where I would start.
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.
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?
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.
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
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.
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?
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.
- 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.
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...
See your own doctor, as Medicare covers DME.
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.
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.