I feel I was tricked into giving up my life to become my mother's caregiver. How can I keep from going nuts?

I bet 90% of the people who are caregivers on this site jumped in "temporarily"after a crisis or with the belief that their loved on only had a short time left to live. Wouldn't it have been nice if we had a crystal ball to show us the future back then? Even those of us who still say they would do it all again could have benefited from a clearer understanding of what we were signing up for, and for how long.

lostmelife, you are not alone in what you're feeling. I came home under the premise that my parents were dying and needed help. They did need help, but what they wanted most was to remain in their home. My mother was willing to do whatever needed to make that happen. Now here I am 8 years later. My father died and my mother is near death. I am waiting for something to happen so that I can do something. I'm at the point now that I don't know if I can handle this last stretch. She won't leave the house to go to a facility, but I don't want to bring in hospice, either. Bringing in hospice would commit me to heavy-duty caregiving. I'm not up to that task. What I'm really hoping for is that she passes quietly in her sleep without anything dramatic. I'm tired of having her fight at me like I'm the enemy who is making her ill. I'm tired of living through thermostat wars. I'm tired of feeling like a bad person when I am anything but that. I'm exhausted. I can understand how parents of a chronically sick child feels. The situation is so much the same. Once you assume the task of family caregiving, it is hard to walk away unless the person you care for cooperates with you. You can't just leave them alone and walk away, and you can't grab them by the ankles and drag them into a facility. So you wait as a huge part of your life passes by. Yikes, I'm depressing myself, so I better quit.

Caregiving needs to be a family effort, but the family is very willing to put the burden on the back of one person, then go on with their lives. Some will help a little if you ask, but the caregiver shouldn't have to ask family for help. Wouldn't it be cool if family just showed up with a bag of yummy groceries or maybe a meal? Those days are gone if they ever existed.

Even though many people on this discussion forum (and elsewhere) can fully relate to your experience, lostmelife2this, I disagree with one thing you said:

"now I'm stuck. ... I have no life at all"

That is only true if you decide to let it be true. What if tomorrow you walk under a ladder and trip over a black cat and wind up in the hospital and then rehab for 3 months? What would happen to Mother then? There really are other options for her than living under your care. And you are the one who gets to make the decision, or at least the decision that you can't continue to care for her.

I think you should start with a needs assessment for your mother. This can usually be arranged through your Area Agency for Aging or your county's Human Services department. The person who does the assessment is usually able to suggest some options for meeting those needs. For instance, living with you she might attend Adult Day Health Program, freeing you up during the day. Or having a companion or aide come in at designated times would also give you some respite.

Or, if your make it clear that you cannot continue being responsible for Mother's care, they may be able to suggest facilities that she could move to and get the care she needs. You could have your own life again, and still maintain a relationship with Mother by visiting often.

What is your mother's financial status? Might she qualify for Medicaid? Looking into that is the next thing I think you should do. Don't make any assumptions about what she can and cannot afford. Document all the assets she owns and the income she gets monthly. Take that information plus her needs assessment results to an attorney specializing in Elder Law (paying with Mom's funds.) Let the lawyer explain what financial options your mother has.

If you decide to go on as you are, you're stuck. Research the other options before you make any decisions. You're only stuck if you decide to be.

..and where are all these family members NOW? Gone, I assume.
You did a good job bringing mom back to good health. Now who is taking care of you?
Has she the financial resources to be placed in a NH or ALF? Then, do that. Get on with your life. If not, start calling these "family members" and saying "You guilted me into coming back to care for mother, she's fine and I'm on the verge of mental collapse." If that isn't effective to garner some help, (and don't expect much) try getting aides in a few times a week for a break.

Sounds like she is well along in some kind of dementia. Along the lines of caring for her, she also needs a psych evaluation.

You don't mention siblings--are there any? This isn't a burden to be borne alone.
Come back and let us know more of your situation. You'll get more help if you tell us all more.

Cwillie , you read my mind. I did jump in with full intention of caring for my mother when she was 88. She had COPD and soon after moving in, developed pneumonia. She spent months in and out of hospitals,rehab facilities, home health, doctors, back in the hospital, nursing homes, and around again.the running back and forth was killing me.
I have 3 brothers and two stepbrothers. I am the only girl and the only one who lives nearby so it was expected that I would keep her although she was willing ton ALF. She was not suffering with dementia and I just couldn't put her inone of those places. Even if I put her there, I would be visiting at least once a day to make sure she was getting the treatment she needed. That is what I have done every time she has been in a hospital or facility. So now she is 92 and the new doctor says she doesn't have COPD and doesn't need oxygen! She has no other issues except reoccurring UTI's which I have cleared up with some very old advice from my sister-in-law who is a nurse practitioner.
But I still feel guilty if I think about going on vacation even for a long weekend.
I have one brother that calls regularly and gives me moral support and his wife is the nurse practioner. The rest of the family calls her occasionally but rarely calls me.
My husband has been awesome and he even suggested her coming here as soon as my stepfather passed. But he let's things like how loud she keeps her tv, and what a barker her little dog is, get on his nerves.
This week I noticed that one of her grandchildren was taking a vacation with her family less than two hours away and she didn't stop in. They live about 20 hours away and it hurt my feelings for me and my mother. I couldn't imagine being that close and not stopping to say hello.
My mother thanks me every day for taking care of her and we get along well. She knows what the deal is and she just shakes her head sometimes because she always took everyone in, even if they weren't blood relatives. It is going to cause many problems when she does pass away because she has built her suite onto our house, which gave her a lovely place to spend her time but also cost a sizable sum. She has also insisted in giving me the income from the sale of her house. It makes me feel a little guilty but I quit my job and given up privacy as well as quite a bit of freedom, to care for her. My husband reminds me that living in a nice ALFwould cost her more. He has a point there.

Right now I'm dealing with my mom (78) and my aunt (80) and both of them LOVE nothing more than to complain about how bad they feel, how awful everything is, what a terrible job my cousins and I do in caring for them and for my FOUR other aunts who are all in their 80s. Mom calls constantly to dump on me about how worried she is about Aunt, who recently went through chemo, and then I get dumped on again from Aunt herself about how bad she feels, how unfair it all is, etc. I'm expected to sit for hours and listen to it and handhold... and I also feel like I was tricked. I didn't realize when I moved back to the area where my family is from (basically to take care of my dad, who died a few years ago) that I was signing up for a decadeslong treadmill of elder care. These women could easily live to be 98 years old - it runs in our family.  Many of them smoked for decades so it's basically in and out of the hospital with COPD and similar, never ill enough to die but never well enough to enjoy life.  So on we go.

I also have an uncle I'll probably be looking after, but at least he bought long term care insurance instead of saving not one cent and expecting me to move him in and provide his care myself, like my mom apparently does.  I am expecting a battle royal when she hears the plan may be more like qualifying her for Medicaid, but *she* chose to retire in her mid fifties and "play" for 20 years instead of saving for old age.

I wish I didn't feel so depressed and desperate. I wish I didn't hate this so much. I wish I had my support system back instead of having to play support system for everyone else.  It doesn't help that three of my cousins have spouses with cancer, plus another cousin has it himself... my aunt that I'm closest to just got through cancer treatment and now has heart failure... I am just... exhausted from having to stay positive for other people and talk them down from/through things. Meanwhile I'm supposed to be doing some work on my own home based business, and it seems like every time I try to set aside some time to do that, there's another emergency and I'm expected to go "be there" for somebody.  Nobody is there for me, other than my long suffering spouse, who I'm worried I'm driving away with my constant irritability and unhappiness over all this.

Honestly until I wrote this all out I didn't realize things had gotten quite this bad. It's time for me to find myself a therapist. Going to put that on the list for tomorrow, after I get back from handholding relatives through another cancer surgery....

I'm so sorry to hear how you feel. I know you have made a huge sacrifice. But its never to too late to explore your options. I know the anger and resentment is great, but there is a way out. Try to talk to a social worker and see what is available in the community. Feeling trapped is not good for you or your mom. I hope you can find the supports to get out of this situation.

I would invest some of the mortgage payments in day aides from a franchise like Home Instead. Made all the difference for me....and I'm sure my parents like some of their in home aides more than they do me, which is awesome! Lol! $25 an hour in 3 to 6 hr shifts....heaven. They drive my parents all around, make meals, supervise showers, reorganize closets...do all the fussy obsessive little chores seniors love to do, which make me crazy as I don't even do them in my own life. Like I have my groceries delivered but my parents would NEVER do this, so the Home Instead person does that 3 hour grocery project with them right down to the last insane coupon or manager's meat special that my dad is preoccupied by. AND he has a WAY better time with his aide than he ever would with crabby old me!

Definitely find a therapist, Hellebore. You are drowning. And you know it, which is an important first step. The therapist will help you find ways to put yourself and your marriage first. Your elderly relatives will be in bad shape with or without you (oversimplifying, I know). It's time for you to regain your footing. And if you don't "click" with the first therapist, find another one pronto! Big hugs. We're rooting for you.

Hellebore7 - You're being crushed under all of the weight of supporting all those people. Buy yourself a plane ticket and take a vacation! Tell them that you're leaving (when you're at the airport so no one can stop you)...but don't tell them where you're going or provide a method for contacting you. I know that sounds irresponsible but you can come back refreshed, see your therapist and take a break to think! You need to enlist the help of others - see if they show up while you're away on your vacation. It may only be a week and it may only be a few miles away (maybe the airport is too extreme)...but don't cave and run back to listen to all the complaints and negativism. There are plenty of care organizations out there - find them - and unload before you're no longer able to help yourself or any of them. Remember what they say on the plane - you must take the oxygen mask FIRST before putting it on anyone else - otherwise you'll pass out and won't be able to help anyone!