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

..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.

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.

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.

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.

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.

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.

Angel 5425: " 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."

I hope it's not going to cause you any legal problems. (I'm not saying it should, as I think you deserve it all, but we often read on this site how disgruntled relatives make a fuss when they don't get what they think they deserve after the elder dies.)

Are you the only one who will inherit? Is there anything to inherit besides the proceeds from the sale of her house? I hope all that your mother has told you is in writing.

Oh yes Angel, I have the same reaction to your comments as CTTN. If you foresee legal problems on the horizon it would be so much better for you to deal with things now while your mom is still here to make her wishes known. I think I would prefer dealing with a big p-i-t-a$$ now than a major fight later.

The house was sold to a neighbor and Mom wanted to hold the mortgage and have the mortgage payments go to me. The home was in both our names for quite some time so I said I would rather have the mortgage be in both our names with the contingency that if one of us predeceases the other the remaking party would automatically inherit the rest of the mortgage payments. That was added to the mortgage paperwork and handles at the closing. However, now the neighbor that bought the house is dying of terminal cancer. His daughter asked if they could sell the house. We told them that they could do anything with the property as long as the remaining principal and interest was paid. If that happens, we will be dealing with a different situation, so I will ask Mom to go to see her lawyer with me to either redo her will or leave it as it stands splitting all her assets with my three brothers and two step brothers. I really don't care which way she goes.

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!

I totally agree with the comments above, especially Jeannegibbs. You have options. If you bring Hospice in (if your mother is qualified) you will not be committing to anything except making her comfortable as she goes through the dying process. I was my sister's sole caregiver for 11 months and eventually had to move her to a board and care home, as the stress of 24/7 caregiving was making me crazy/stressed/unhealthy/resentful/annoyed/sad/guilty.... you get it, I'm sure. She did not want to go to the board and care home, but for my mental health and her physical health, it was necessary. If Hospice is involved, they will continue all services at the new address, whether it's a nursing home or assisted living. I now visit my sister regularly, and I have some of my mental health and freedom back. Hospice also provides counseling services to the family, before or after death, which I have found invaluable. Please research your options. Know that you have them; you don't have to remain in this caregiving position just because your siblings want you to (so they don't have to help or worry). Don't feel guilty; you've done nothing wrong. You've done the best you could with the resources you had available. It does sound like your mom needs to be in a facility where she'll be monitored 24/7 for safety reasons. Please let us know how you're doing.

lostmelife2this, time to let your Mom know that you can no longer keep helping her, it is too exhausting. Sounds like your Mom also has some dementia going on there besides mobility problems.

If Mom cannot budget for Assisted Living/Memory Care, which is around $6k per month depending on where you live, then have Mom sign up for Medicaid [which is different from Medicare]. Sounds like Mom could qualify for a nursing home due to her health issues. Medicaid would place a lien on Mom's house.

Will Mom be upset moving to a nursing home [better call it senior living]?  Of course, she might even disown you.  Tell her she will be around women her own age, thus have new friends.  Yes, she will want to go home, but home is actually her childhood home. 

Who has Power of Attorney?  If you do, sell the house and use the equity for all of Mom's care. 

Now you can once again go back to being her "daughter" instead of her "caregiver".

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....

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!

Do you have siblings? You left off many details so it is hard to determine your full situation. I have to say I agree it was a mistake to give up your career. I did that for my mother in law and REGRET it. But when no-one else steps up someone has to. Please get in contact with a support group and also talk to your Doctor. Get some help so you can take a break from caring. Also those family members who made you feel guilty, maybe it is time for one of them to relieve you. Take care of yourself.

Wow -- Hellebore 7, your life is horrible! Please keep us updated -- you have been given some good ideas here. So you and your H are living separately from all these elders? But you will be expected to take in your mother at some point?

(I also wonder...are you an only child?)

Thank you everyone!!!!! I am essentially an only child - I have an elder half sibling but he has a mental disorder (BPD) which makes him both very difficult to deal with and not reliable when it comes to helping anyone else. (Sadly one reason my mom is so cash poor is she didn't set boundaries with him and supported him well into adulthood without setting reasonable expectations that he would provide for himself. He finally has a job he's kept for a while - usually he quits after a few months after fighting with others in the office, it's always all their fault - so he at least won't be a destructive force for a while perhaps.)

Unfortunately there aren't really that many other people around, who aren't ill with cancer or dealing with a spouse ill with cancer, I mean. I don't know why this string of calamities seems to have hit all at once, and what’s weird is in 3 of the 5 cases in our family right now it's the same kind of cancer (colon… in people who in some cases aren’t related by blood. Go figure). My grandparents originally had ten kids, but each of those kids had in most cases only one kid... or no kids... only two of them have more than one. In total there are four aunts with only three kids between them who can help (one of them being me, and one of the others has a spouse in chemo.) I do think some of my other cousins would help financially, perhaps, but none of them live in this area so hands-on care won’t be forthcoming.

I finally really set some boundaries with my mom that she is not to hold an expectation that she can call me any time and unload with how awful everything is...a lot of this is about herself and her fear of losing her own support system, as well as her fear of what’s going to happen to her going forward since she’s managed her money so poorly. She also really likes things her own way, which is going to be a problem when it comes to a discussion about moving into *my* house.  (Currently mom doesn't live with me, but won't be able to stay in her home much longer perhaps thanks to said poor financial decisions.  We may move her into an apartment but the metro we live in is now exponentially more expensive than it was when I bought my own home in what's now a "trendy" neighborhood, so options nearby may be prohibitively expensive.... hello, sitting in hours of traffic every day.  Sigh.  We probably have a few years before she can't drive, at which point I'll either have to move her in here or we'll have to look into Medicaid since she has no money for long term care and I *am not* going to exhaust my own retirement savings on her care, for a few reasons.)   The other aunts are living with my cousins b/c they also don't have any savings.  Two of them have houses we can tap into, at least, tho they're not worth very much and won't go far toward the 15+ years of nursing care that may lie ahead. 

Earlier today was talking to mom about all this and got a lecture on how I "have to be more tolerant" because I've never “been old and sick/in chemo and don’t know how it feels.” Of course, what I'd like to say - and probably will say soon - is that she herself doesn't know how caretaking so many other people feels, since for most of her adult life we lived in another state, my dad’s sibs cared for his parents and she had nine siblings to take care of her own.  Clue-less.

I've started asking friends for therapist referrals but I also have another complication- ADHD diagnosis, and some therapists insist you see someone who specializes in that b/c it can cause many of its own problems. I'm also intolerant of many of the meds used to treat it, even the ones they give little kids, which is another layer of difficulty - a lot of docs don't have many other practical suggestions if you can't take the meds.

Ah well. It certainly does help to vent here among other people who know how it is… part of what makes it so isolating, of course, is that other people IRL don’t “get it.” I don’t know anyone with nearly so many family obligations so I feel like my friends think I’m making excuses when I’m unavailable to do things with them… many of them have stopped asking.

I wonder if I might find a therapist who specializes in elder care. Maybe someone who might have some practical suggestions on what’s available in my area. I’m aware attorneys do that kind of thing, think I’ll look into that as well.

Yeah I was just supposed to stay for two weeks been over a year now. And even though there children live less than a mile a way. They won't have anything to do with care giving I'm just there son in law and have to drive 12 miles a day to come to there house. There daughter stays here at night at least. I just took over for my wife because she wasn't strong enough to handle the lifting. Asked if they could come after work so I could do some kind of work and make some money. Naw I got to relax after work I have things to do I can't take it. Is the reply. it's like them saying your the lest important person so you do it no one will miss you.

Wouldn't it be nice if you and your cousins had a family meeting and agreed to get all these elders qualified for Medicaid and into the same facility?

CTTN - figure that was meant for me... trouble is, as many of us here know, old people want to stay in their own homes first and foremost and many of them have no willingness to understand what they're putting caregivers through. I do think there's a chance I can household my mom and one of the aunts, but two others live about an hour away in different directions. One them, Aunt D, still has a living spouse, but he's 90 and not doing super well... Aunt E has a son living next door (he's the one with the spouse in chemo.) His mother is resisting moving into his home - next door! - to make things easier on him while caring for mom and spouse... SMH. He won't use leverage to MAKE her do it, so I get a lot of ain't-it-awful phone calls about how hard things are for her - and for him! Unfortunately the boundary setting in my family hasn't always been first rate, and I have a limited amount of influence as far as getting my cousins to do things (I'm the youngest). So what I'm working on is setting my own boundaries with my aunts/cousins - if you won't help me get your mom to do X, then don't expect me to listen to you complain about how bad everything is.

I'm hoping for more householding once Aunt D's husband dies...

Thank you all for your feedback. I feel stuck anyway. I'm not sure what my mom's income is because I have no access to it. I have one older sister who cannot help because she is battling cancer. My mother should have had a psych evaluation 50 years ago because she is not normal. Besides being racist, she mistrusts everyone, doesn't like anyone or anything, constantly judges eveybody's appearance, she sits around being quiet so she can "listen" to what I'm doing. When I leave to run errands I come home to find her going through my things. Long story short she is not a nice person and my heart is hardening by the day.
All I know is she has this old 1960s house and social security. When she came home from rehab she was afforded nurses for three months and then they quit coming because that's all her insurance would cover.
I was recently given the news of my lymph counts are twice what they should be and was told there's nothing they can do. I feel fine, I think it's from stress. I'm not going
to die anytime soon but even if I do I'm fine with it because I don't want to spend all my remaining time in/out of labs etc.
The only way I can get her somewhere else is to sell her house and use that money along with her ss to fund other housing. Then I will have to relocate and hope I can get hired at the age of 59 somewhere. I am burned out already.

lostmelife2this, glad you came back to give us an update. Sounds like you are still stuck between a rock and a hard place. Your Mom can manage pretty well yet cannot be left alone. And if your Mom didn't save for these very "rainy days", then what?

If Mom can apply for Medicaid and be accepted, maybe Medicaid can send over an Aide to watch your Mom while you have a chance to see life outside of the front door. All the way around, this isn't fair to you nor to your Mom.

As for Mom being racist and judging other people, that is somewhat of a generational thing, and in some areas of the country it is still alive and well :( My Mom was like that, so was my sig other's Mom. Even sexist, my Mom would see a woman sports reporter and snarl "what does she know about sports, she should be home having babies"... [sigh].... yet my Mom knew all of the football stats, the Quarterbacks, the Coaches, etc... go figure.

Most of the time we need to wait for a medical emergency before we can place our elder into some type of continuing care as rarely are any of us qualified to be skilled nursing home type caregivers. My Mom refused caregivers nor moving her and my Dad to senior living. Nope, never, not in your life, nada. My Mom had a serious fall thus spent her final months in long-term-care.

Lostmelife, since your post was 4 months ago, I hope that by now your situation is better.

I’ve never seen a post on here from a Caregiver who’s said, “I love wiping behinds, struggling to give someone a bath in bed, being ordered around and just generally being treated like dirt!” We are the unsung heroes with thankless jobs who do distasteful things and put our own lives, health and needs on hold for someone we love while everyone else is turning a blind eye to what we’re doing. I have put off shoulder surgery for extremely painful shoulders because there is no one to care for my husband. I was a reasonably healthy person but now my mental and physical health is shot because of him. When he lays in bed all day and night and grunts and groans ( he’s not in pain) I’d like to jump up and slap him and tell him to knock it off. All our married life I’ve wondered if he truly loves me because there are a lot of things he’s done to prove otherwise. And now, when I’ve realized he does, it no longer matters.

I sincerely hope you’ve found some peace. Hugs! 

Hey Lost, you don't need to keep this up; burned out and just about tired of it all at 59 is NOT good.... Freqflyer has a good idea; there were also some other really good answers to your post. If you can't manage it, get social services to help you, or one of the other agencies mentioned. My mom is difficult with me, but she's fine with her social worker, weekly RN, housekeeper, etc, etc. She has very little ss and lives in a small apt with her cat, but social services oversees her and provides her with most everything she needs to manage; the rest of it gets done with a few paid helpers; hairdresser comes to her apt, hsskpr drives her places, friend takes her to church (since we go to one in another city), other residents help her with things, vet comes to her place for her cat, and on and on. Even if I try to do something for her, it gets done before I can come up with it - it's the Lord providing all this for her, and doing a wonderful job of it, too! I talk to her on the phone often, and help or just go see her or take her out to eat once or twice a week... and it's enough. See how it can go? Don't give up, make a few calls....