How do I stay sane as a caregiver?

It is difficult enough to live with a "husband", with a roommate. Living with a parent is that much worse, that much more difficult. You had different expectations of where your life was going--perhaps you saw a time you and your husband, free of child care and jobs, could travel, or whatever, enjoy hobbies.
Why "go there" in these subjects of what you gave up, whether or not you qualify as caregiver in discussions with your Mom? As to getting away, if Mom doesn't have severe dementia then you need to do that now with someone to check in, because later you truly can't.
These are choices you made for yourself. There may be times you resent them, wish you had made other choices. That's called normal.
If you feel you don't wish to go on, the know that you DID move in and you CAN move out. Not every elder has children who are living, or who have/will move in. That means they choose the best care they can find for themselves ongoing.
Again, these are choices you made. You can unmake them if you choose to at this point.
Consider a few hours of counseling with a Licensed Social Worker in private practice as a counselor; they are good at life transitions choices work.
I wish you the best. Coping is what we do. It's what we do and it isn't always, in any generational shift, easy to do. We sometimes thing we are heading to a time when we can be carefree and happy all the time, and it never seems to get here.
My best out to you.

To be honest IMO if you live with a person with dementia, there is no way to stay sane.

For me that is one reason I would never consider doing what you are doing. Both of my LO's are in a home, one AL the other MC. My brother & I are taking care of them, they do not have to live with us to do that, and they never will.

You are not helping your mother by doing everything for her. And why would you give up your life for her? Makes no sense to me. When she is gone you will have nothing, no job, no circle of friends and be an emotionally drained person.

IMO, there are options, you move back to where you can from, she can either go with and live on her own or AL or stay where she is. If you stay where she is, you get your life together, get a job, your own place and move forward.

I would consider getting some respite care for your Mom; hiring someone to come and help her with certain tasks; taking the load off and being honest with her about the behaviors that are not working for you. Tell her that you deserve respect and acknowledgment, as you have changed your Life to help her to stay in her home. She probably needs some mental health counseling because she is frustrated with needing help and missing your Dad, taking it out on you.

There was an alternative originally, you know. What about moving your mother across the country to live where you could support her? - then you'd still have your job, home and friends; and your mother would have you nearby to supervise and administer the support she needs.

She wouldn't? Oh dear. Up to her, if she chooses not to do that then she needn't. But her refusal to consider a practical arrangement does not equal a responsibility on your part to implement her choice.

Right. I will be frank. What has happened so far is good for neither of you. You are disabling your mother and preventing her from developing *any* potential for independence or regrowth by filling your late father's shoes. And, as a side effect, you have ignored your own right to grieve, you have trashed your life, and you have ditched both employment and the support of your social network.

And you think your situation isn't bad enough to be worthy of sympathy or demand urgent changes?

You did all this to comfort your mother and support her happiness. I think those are both very good things to want, only this way is not working. Your mother is not comforted, she is not happy, and you are getting none of the results - let alone the rewards - that you aimed for and deserve.

It is not too late. Allow yourself to think really openly about alternative possibilities. You could see if your job might still be there, what about getting your house back or finding an equivalent, you could explore housing options for your mother in your home location, you could find out and add up what assets and income are available - in short, you can make a different plan.

You don't need your mother's permission to do that. Try it, and see what goals emerge.

First, understand that your first and most important priority is to take care of yourself. If not than as you have already discovered resentment and anger set in -Frequently then you become ill and no one is helped. Next, Don't enable your mother by kowtowing to her every demand. You don't mention your mother's health or financial situation and they become part of what you need to identify to help you do any planning for her continuing care. If she doesn't already have them you should see an elder care attorney to develop POA for finances and health and a Will. Talk with her doctor[s] to see what limitations she has. You might also get some counseling for your self - others may complain, but that doesn't mean you have to pay any attention to it -just consider the source and what they contribute to help out. How many siblings do you have? Try to sit down with them to work out a schedule for who does what and when . If finances [or hire someone to stay ]allow when sibling is present for a period of time take a vacation even if by yourself to help wind down. Do you have any children? if so, talk with them to see what if any help they can provide. You might join a church or similar organization and/or local senior citizens group - local Dpt. of Aging should also be a good resource for you.

Your mother does not recognize her need for your help. In a sense she is blind to her need and your assistance. "Being blind" means she can not recognize the truth of the situation. Please get her evaluated by her doctor for dementia and mental competency. If she tests positive for dementia (75% of seniors 75 years old and older DO have dementia to some degree), then get a referral to a neurologist and a geriatric psychiatrist. The neurologist can evaluate and treat her dementia (medications can slow it down in early stages), The psychiatrist can help with behavior problems.

Additionally, You need some support. Look for a grief support group - online or in person - to deal with the loss of your spouse. Also, consider adding some helpers to your caregiving team. If you get sick or injured, you need a few people who already know your mom's routines and medications to care for her while you are unable to. Those extra helpers can also allow you some time off to develop relationships with people who nurture your soul and provide friendship.

I know how you feel. The resentment is real and will increase with her increased needs. Is there any chance you can get an aide for a few hours a day!

LeilaNS: Perhaps you would want to give consideration to managed care facility living for your mother.

Then leave and let her find out how much you do. You can still pay bills remotely. Let her get her own groceries, make her own meals, call for a ride to go to where she needs to go, etc. People like this need a dose of reality, unless she has dementia, then reality doesn't play a part in anything.

LeilaNS so many of the things you said ring true for me too. I care for mom 86 in my home. I too have built my retirement around her. For me, like you, caring for mom has become a series of neverending chores. The lovely idea of having a room full of books, puzzles, phone chats, and tea times slowly gave way to pacing, worrying, crying as her brain could no longer handle these things. Caregiving is not the hallmark card I had imagined. You mentioned your mom's constant worrying. My mom too. I never expected it would be so horribly difficult to deal with that, but it is awful because it drains the joy out of every day. So now not only is mom miserable, I am becoming miserable. As so many on this forum have already suggested, I have planned a 2 day vacation. First time a caregiver wiIl be overnight. I learned not to tell mom ahead of time. Just having something to look forward to has lightened my burden. Maybe some short vacations in between your annual one would help you too. As my supportive brother said when I first took in mom, it was the right thing for the right reason. Now hiring caregivers is the right thing, soon ALF/MC will be that right thing for the right reasons. I wish you the best.

Your situation is just as bad as anyone else's. Just because you're not wiping or changing diapers does not mean that you aren't enslaved to caregiving. You are.
I don't have to wipe my mother's or change diapers, or bathe her. I do have to deal with the commode every ten minutes. Even though there's not so much hands-on care, being her caregiver has nearly destroyed me. I thought I would be fine because I made my living as an in-home caregiver for nearly 25 years (mostly to elderly). There is a long history of abuse and dysfunction as well. My mother did attempt to make some amends for her behavior in the past so I decided to move back into her house to help her out. The narcissism, negativity, misery, nagging, constant criticism, belittling, berating, and bullying dragged me so low into a hole of despair that I almost took my own life. Yes, this is true. I got help in the form of therapy and my ex-husband. I'm walking away from caregiving. Either my sibling steps up and takes over, or the state does. One way or the other, I'm out and done.
For your own sake, you should be too.
I think your situation may be worse than mine if you cannot leave her alone for any period of time. Along with taking her abuse, you also live in the mind-numbing boredom of providing elder baby-sitting which can be likened to watching paint dry.
So, my friend you have it tough.
Your sibling needs to start filling in one week a month, Not one week a year.
Please look into facility placement or homecare services. Start looking into getting your own place too.
You're 65 years old. How many good years do you think you have? People are supposed to enjoy their retirements. Not spend those years enslaved to the care needs of an ancient parent.
That's why there are senior living communities, assisted living facilities, nursing homes, memory care facilities, and homecare.
You have choices and options. Please for your own sake, start considering some.

My mother is now in assisted living but when she was home and I really needed to get her help, a social worker said to me “you can’t wait for her permission, she will never accept help.” So see if you can work with caregivers on a story like they are nursing students who need practice or in college and want to interview your Mom for something, then just have them start doing stuff. NEVER say people are there to “help” her, they want to retain their independence. If you have to you could say they are there to help you.

You matter too and you deserve a life. Good luck.

LeilaNS, if you can afford it, you have to have someone come in during the week. Start off slow, 3 days a week for 4 hours a day or something like that. Or maybe there are volunteer respite services available nearby? Maybe contact your local Area Agency on Aging? I find it difficult to find available services, but I keep trying. Whether your mother likes it or not, it is necessary for both of you: it will give you a chance to get away (mentally and physically), and it would honestly do your mother good to be around someone else for a change. I completely understand how hard it is to separate yourself from your mother's needs -- I struggle with this myself. But I think we all have to try to stop getting sucked in so deeply that we loose our sanity.

The first step in accepting and truly owning the choice you've made is keeping composed and focused while delivering care. Start considering other choices if you genuinely don't think providing care is for you. The second thing you can get information related to home care is the below-mentioned website.
<a href="https://inhomecare.services/">https://inhomecare.services/</a>

Have you given any consideration to placement for your Mom?
Would you consider therapy? 65 is way too young in our day and age to either throw your own life away on the altar of caring for your Mom who has already had her own life, or to give up your own friends and plans. This is, quite honestly a window of several decades where you are free in a way you have never been before to do what you wish while you are still well and able. You will soon enough be where your Mom is. I, at 80, am glad enough to be down to walks, gardening, trips to my daughter and grandson for a visit, reading, sewing, a few other hobbies including fostering dogs. But I am so glad that I had those years when I could still hike a bit, travel to other far away places, explore the world retired.
I wish you the very best. Only you can make these choices for yourself.

" I lost my husband then gave up my job, home and friends to move across the country to help her."

You gave up your husband for Mom? He was your #1 priority. Why can't she be left alone? Where there not other options that could have been considered without you having to give up ur life for Mom.
Where there not other siblings? Sell her home and place her in an AL closer to you? I think we all "jump into the fire" before looking at the whole picture.

Contact Medicaid thru your Social Services. See if Mom qualifies for in home assistance. They will go by her income, not yours. Even a few hours a day will give you a break. Call Office of Aging for help there. Don't say Mom doesn't like strangers in her house. Tell her you need a break. That you need to have a life outside of being there for her.

Just curious...how many siblings do you have?

I know you volunteered for caregiving, but why does that mean you have to do it indefinitely?

Seems like what Mama wants and what you NEED are not the same thing.

I was also taking care of my mom without the ability to leave or take long weekends. I hired a caregiver to give me breaks. My mom was not happy with a caregiver but I did not give her a choice. It was no easy but it did allow me to go to dinner occasionally and take long weekend breaks. She complained each time when I returned home but that did not last long, She would forget. You will be able to deal with caregiving much better when you have windows of rest. Otherwise, burnout is hideous. I have transitioned my mom to an ALF and finding the relationship is to be better now that I am a daughter more than a caregiver. Figure out a way to get breaks for your own sanity.

I kind of understand how you feel. I moved in with my mom when my dad died 20 years ago.. My mom is 96 now. For the most part she is all there but I have seen her mind slowly slipping over the last few years.

She does constantly criticize and complain about everything. She doesn't need a hands on caregiver yet but she can't be left home alone either due to past incidents in the house.

Her social security goes to pay all her credit cards that she has run up over the years.. other than that she has no income. I have taken over the house and literally support her in any other way. There is no money to put her in home if the time ever comes and with her name joint on the house that makes it harder.

I have asked some of her so called friends to maybe take her to lunch, I would even pay for it but no one has come through.. I know having a break away from me and the house would fantastic for her.

If you ever need to vent message me..I totally understand the resentment part and I have to keep reminding myself she is like this because she is 96, but I know I never want to put my kids in this position. I want them to enjoy their years without worrying about me.

I don't understand some of the comments and questions on here at times. I DO understand the circumstances. I moved back over 14yrs ago and there are levels to this terrible disease. Early on I would fuss and go back and forth with my mom and get soooooo frustrated at the things she was doing that were counterproductive to me helping. But this was when she was still walking and talking... When she got sick and was misdiagnosed with some BS virus but ended up in critical condition and needed emergency surgery I felt like crap!!!! I knew she wasn't herself but I didn't quite understand the disease and make the transition like I should have until that unfortunately happened. Me seeing her in the hospital on a breathing tube and when I would go home overnight and the phone would ring in the morning having anxiety it was the hospital with the worse news in the world.... It made me look at things different. I say all that to say this... It's extremely hard to deal with. Early stages are the hardest in certain aspects because they can still communicate and say and do things that make you want to just quit!! But you have to remember the relationship you had before the dementia came on. Obviously people are not themselves so wondering and wanting them to be a certain way is just not going to happen. If they live long enough there may come a time where you wish they could get on your last nerve. It's a hard tough road. I would suggest finding someone who can be your support system. Whether it's a therapist or friend or family member or anyone who can take you away from your everyday dealings with her. Or if affordable get someone in there for a few hours a day during the week or weekends. TRUST me every little bit helps. Also find something whether walking or sitting and enjoying scenery but find something that can give you peace if only for a hour a day where she is not there or around or sleep. You need that!!! Just imagine if it was you with dementia and someone had to take care of you and were going through the same emotions... You're a totally different person. Would you want someone to give up?? I know it's so tough!! I'm still going through it with my mom. She needs care until she's in the bed. I wish she could get around and argue with me and get on my last nerves... You have a tough decision to make. You've already moved and given up a lot. Are you ready to move her to a home or assisted living or can you find someone to give you a break for a while from a agency or private care or a family member to give you a sanity break? And remember. Whatever decision you make you're going to question whether it is the right one. Whatever you decide PLEASE don't beat yourself up. You still have a life to live and no one is promised tomorrow. Make the most of it while you're here. You've done a lot already. Good Luck

Let me ask you something, are you happy? In 10 years from now or longer if you were still doing this, would you be happy? You’re very young and could be risking, for lack of a better phrase, the last few of your good years dealing with this. I’d do some soul searching around that.

My mom, god rest her soul, always said everyday after 60 is a gift. Now at 63, I agree!

I personally would never do 24/7 regardless of what that looked like and how in-depth or not in-depth the care was. I salute the people who can and admire that so much but it’s not for me. I also would never expect my children to give up their lives for me. They can gladly put me in a home I tell my daughter. Just give me some good books and sweets!

Can you hire caregivers?

We just hired a home health aid to come in 3 days a week (8 hrs. A day). I love my mom, but i think this will be good for me and her.