How do I cope with being treated like a servant, not only by my mother but by everyone?

Mr DT, It seems that people are meeting your expectations according to what you project. Your Mother is manipulative and she keeps Winning. You are letting her. You say, " if I had to take her to a nursing home it would have to be under physical restraints". SO? Would she be so angry she would disown you? Then what would she do? This tells me she can afford to be in a care home, you are just afraid to take her. As a woman, I hate to say this, but you need to "man up". It's either her or you. Risk the consequences for your own survival.
For a year my Mother was lived with us. My husband and I planned a trip away for a long weekend. It was our first getaway in a couple of years because of finances. I told her the caregiver would be here overnight as we needed a break and to have some fun. She couldn't care less, as she was at that point in her dementia progression: world closing in, rediscovering belly button, as it were. She said, "Oh, then you won't be HERE. What about ME?" You do not want to know what I said under my breath, but THAT was IT!!! Within the next month, I found a place I could trust, and moved her into it. I did not visit her for 2 weeks, and she settled in and has other people she is fixated on. It's like a cat--whoever feeds it becomes its' owner. Your Mother will do the same, and probably try to make you jealous.
Listen, we are in charge of our children for a time to teach them, protect them, and hopefully, we send them out into the world not needing us. We don't let them run our lives as they are growing up, or it would ruin THEM. On the other end, now we are responsible for our elderly parents, and for some reason, they get away with that which they would NOT let us get away with! Get your life back, DT. Hugs:)

Before agreeing with Christina and Austin, I want to embrace you, DT, and pat you on the back. Please accept a warm cyber hug.

I am 66. I have been full-time caregiver for 8 years. What you are saying about only being seen as a caregiver really stikes a chord with me. Especially at the beginning, friends would say, "Take care of yourself! If you don't keep up your health you won't be able to take care of him." Wait a cotton-pickin' minute! Last year I was a friend and you'd want me to take care of myself because I am worthy of being taken care of, and now you only care about my ability to care for someone else? What happened to ME!" Even professionals would say this. It drove me nuts. It was as if I ceased to exist in my own right. I was asking one doctor to change my diabetes medication because the one I was on gave me severe episodes of low blood sugar. He was reluctant to change. I described an incident where I was in a shopping center with my husband and nearly passed out. "Oh that's right. You are a caregiver. I'd better give you something less likely to cause extreme lows." Argghh! I got what I wanted but not for my sake -- for that of the person I care for.

My situation is quite a bit different than yours, but in this one aspect, this loss of self, I can really related to you. Other caregivers in my local support group have mentioned this too.

I am caring for my husband (which I think has a different flavor than caring for a parent) and we are in our home of many years. I have some family nearby. I have my same friends (though I don't get to see them as much). I go to my same bookclub each month. I work full-time, from home, which is often a hardship, especially with recent health issues, but it is very good interact with coworkers who see me as a valuable contributor to a team effort. They know about my caregiving but it is not primarily how they think of me. At the Mayo Clinic caregivers are treated as the important part of the care team that we are, and shown respect. Even with all this going for me, I still know quite well that feeling of being regarded as a nonentity in my own right.

I say this was worst at the beginning. By now everyone who knows me knows better than to treat me that way. Strangers (mostly professionals) still do sometimes, but I generally can turn that around. I agree with Chirstina that part of the problem probably is "people are meeting your expectations according to what you project." But I also know that people have their own expectations and often have to be reeducated about what to expect from you. Changing your own expectations of how they should treat you is a necessary step, but please do not hear this as a criticism or that this is all your fault.

You can't go back and re-make the decision that brought you far from friends, or the decision to do all the care yourself, and to not work, etc. etc. You are where you are and you can only try to figure out what is best going forward.

Your mother is on hospice care, which must mean a doctor has said she is not expected to live more than a half a year or so. Of course such predictions cannot have a high accuracy rate in all cases. Do you feel that your mother is in the end stage and will not live many more months? I think that would color what I would do. You have cared for her at home for 12 years, and to place her in a facility now to die might not seem the best choice of either of you. But if the present situation is too much for you, there is no shame in acknowledging that and acting on it. Does this hospice organization have their own facility where your mom could be kept comfortable through this final part of the journey? I have heard wonderful reports of hospice houses. True, Mom might not be happy about that, but if it is the best option for her and for you, grit your teeth and do it.

It sounds like you are near the end of this long journey you have been on, one way or the other. I hope you are beginning to think about what you will do when you emerge from that long tunnel into the light you can glimpse at the end. Will you stay where you are? Is it a suitable community for you once you have time to get to know people and live your own life? Or will you sell the house and move back to your old environment? Are your old friends still there? Is the ambience there more compatiable with how you'd like to live. Will you be recieving an inheritence? How does that impact your plans? I don't expect an answer to these questions -- it is none of my business -- but I hope you are thinking ahead and building plans to look forward to.

Take care of yourself, DT, because you are a valuable, unique individual, fully worthy of the best care you can get. Again, hugs to you!

I agree with Christina -You have to do what I did from listening to Dr. Phill decide that you do not deserve to be treated this way and we teach others how to treat. As my therapist told me you are waiting for someone to rescue and that is not going to happen so I rescued myself by saying and following through of placeing the husband. You need to take care of you and that means she must go into a nursing home-you will visit her and be part of her care but not the only one doing it. She may be upset for a while but I spent much time in nursing homes -my husband was in rehab at least 16 times the last years of his life and I did not see any patients or residents who were clamoring to get out they all adjusted-most in short time. You need to take care of your own health.

DT, I was apparently typing while you were, and hadn't read your reply yet. I want to emphasize again that I can relate to your feelings about being seen as "just the caregiver," and I can imagine your irritation with the stereotypes and platitudes offered to you. If one more person told me "God doesn't give you more than you can handle," I swear I was going to scream. I did tell one person that my poor husband should have married a weaker woman and then god would not have given him dementia. I try to respond to people's intentions and not their dumb remarks, but that sometimes takes every ounce of restraint I can muster.

Anyway, I meant no criticism, and I sincerely wish you well as you struggle with this tough road we're on.

DT..other than the fact that I am female....we could be twins. I too am and have been for 3 years the 60 something daughter solely taking care of mom 24/7/365. You don't even have the time or energy to barely take care of your own personal needs. I put makeup on once a week or so just to go to the grocer. The feelings of loss of self have been intense and with the holidays on us it is even worse. Just recently started with hospice and yes they are great but at times condescending and just show up with no care for me. I realize I took on this journey out of love and still own that feeling. I wish you the best and you are a great person to be doing this.

I cannot contradict some of your criticisms of my way of handling an uncomfortable situation, some are valid and I will accept them. However, there are just as many that are not valid, at least in the context that you do not have the entire story or are assuming, as they say on the legal shows, "facts not in evidence". In the first place, Christina, mom is NOT well fixed, in fact, she is quite the opposite, and to assume that I am "in danger of being disowned" is Presumptuous in the extreme and quite offensive. Anyone who knows me knows that I am not as mercinary as many would be in my place, I am not after what I will inherit. Mom is living with ME. I support her physically as well as emotionally, she partially and cheerfully contributes to some of the household expenses but only for her lifetime and that is that. As to shipping her out of sight and mind to a nursing home, there are none around here that either of us could afford except for the county homes, who are not known for their kind, diligent, and attentive care. She would be dead within three months, there is more to caregiving than changing diapers or providing meals and medications, I should think you should know that. I am not that cold. My dad was in one for the last weeks of his life, and I am not so sure that they were not the ones who killed him finally. Perhaps I have a finer sense of empathy than some and shrink from the idea that mom would feel herself "abandoned". No matter that her narcissism is uncomfortable for me, nobody 'deserves' to be abandoned. And because I do not like to kick puppies or tie cans to cat's tails or arbitrarily shuffle moms off to mediocher nursing homes is no reason to question my manliness. I do not deserve that either and as Dr. Phil might say, I do not deserve that on our short aquaintance any more than I deserve to be treated like a servant by family or visitors. Frankly I was hoping for some more constructive suggestions. Austen's suggestion that others must be taught how to treat you occasionally is a good one, and I have used it myself many times in the past (It is the only reason I was able to adjust to living with mom 11 years ago), thank you for reminding me, but that was in a far more sophisticated environment than the small provincial-minded town I happen to find myself in that does not take instruction so readily but think in stereotypes (once when I was taking mom home from a hospital stay, one older volunteer lady said she guessed I was happy taking her home because I will have some good cooking now, she did not know that I did all the cooking, and that she was just thinking in a small town stereotype). Putting up with platitudes that have no substance is pretty much of a constant battle and I get so tired of it occasionally I could blow my stack. The reason I wrote is because of a particularly bad and disheartening incident this weekend (having nothing to do with mom's attitude toward me) and I assure you, that will not be repeated.

Your mother sounds like my mother. There is definitely manipulation. They think you "owe" them your life. It will eat you up. It will make you angry and have hatred toward everyone. Can she not qualify fo some type of home health aid assistance for a few hours each day? If she has the money ..make her pay for this help. Money is not everything. I would tell the hospice people that I am going out when they come, I have things to do and if they can't do their job, they need to get someone in there that can. Stand up for yourself. If you don't, no one else will.

DT:

As I read your post, I kept thinking of onions and icebergs; and trying to focus on what's underneath the surface. On this site, there's a lot more going on than what people are telling about their lives as caregivers. A few times I've had to take the foot out of my mouth for being so free an easy with the advice. After all, I'm not there to see what you and many others here are really going through. With my words, I try to paint pictures of my world; but at the same time, as I read every post, I try to picture what yours is like. Sometimes I laugh; sometimes my heart feels like it's shrinking, and try as I may not to get emotional those cleansing tears always get their way. ... Sometimes I'm amazed at the resilience of people for whom, like you, surrender is never an option.

Yesterday, during a case conference, I presented John Doe's chart. I reminded the staff that the chart is not the person and stated that I wished he were there to take part in the decision-making that might fundamentally impact his life if he decides to remain a client. AIDS, Hep. C, schizophrenia, incarcerated 1/2 his life, no family, no support system, victim of repeated rapes while in prison. To top it all off, a vicious addition to Ketamine and "Speedballs" (a mixture of heroin & cocaine).

Instead of focusing on how to help this individual, they zeroed in on what I was not doing to help him even though every service I've provided is documented and followed up on. "Maybe you've bitten more than you can chew," "You should do this, you should do that," "Why didn't you come to me for help," etc., etc.. There was a male colleague who indirectly told me I wasn't man enough for the job. I reminded them ours is a methadone clinic, and that it was clear this client needed a higher level of care. Someone said I just wanted the easy way out.

I picked up the chart from the table and put it in the hands of every counselor who didn't think I'm doing the best I can with this client. All I said was "I'm looking for volunteers. Anyone who thinks s/he can do a better job is more than welcome to this case." No one wanted to take it, yet kept shooting their flytraps; this time with "It's not what you said but how you said it," blah, blah, blah.

For about 5 minutes after that, the only sound was their breathing. They kept looking at me as if expecting me to say something else they could pounce on. "Next time you have the audacity to criticize my work, be ready to walk a mile in my shoes. The farthest you're going to get is 1/2 a block. Maybe."

Somebody whispered "Arrogant" from the back of the room. I looked at her and asked if she wanted to ask a question. She said no. I closed with "One thing I don't do is celebrate mediocrity, so what you might call arrogance I call confidence. My clients are the purpose of my day, and that's all that matters. ... Now, does anyone have any suggestions about how to help this man reclaim his life?"

No cigar.

@shamrock13 .We each have had our own experiences. I don't think anyone should be judging anyone on this board. Walk a mile in someone else's shoes. Leave the judgement to the higher power.

Jeanniegibbs - you nailed it perfectly! You have a halo (or at least an aura...) Except for the hero thing, which I discount - I blush...Mom is what she is,(I yam what I yam and that's all that I yam" toot,toot...) Brian has a good and logical approch, if it works for him more power to him, but I cannot apply it to an illogical situation. though as an outlet for the pressure I agree with it wholeheartedly. I try to keep logic in my own life and approch but the nattering nabobs of cockeyed optomism (mixing my metaphores or something) make it difficult. You cannot even argue someone into a state of logic if they do not understand it. I have said this before, on other threads, but right now, I want everyone to go find their dictionary and look up the word "solipsist". It's an odd word, but it is in my New Oxford, my Funk and Wagnalls, my Brittanica, and on Wiki. The basics are that someone may only believe that the self is all that can be recognized, that everything else is an illusion. The term Narcissism is tossed around a lot, but Narcissism is basicly a mental disorder. I was surprised to read that solipsism is more of a philosophy, like Existentialism. But I think it can also be caused by - and I have said this often too - the lack of imagination. They are discovering so must about the brain, serial killers have been examined and have been found to have little or no function in the center of the brain that governs sympathy and empathy, whatever center governs imagination may be entirely lacking in my mom too, for she has none at all! (Some people discount the left brain/right brain theory but after 30 years in the furniture business I can tell you that it is true!) You may find this hard to believe, but I am here to tell you that it is true. Mom can say that she understands things with her mouth, just to be agreeable but how can you discribe a sunset to a person who has been blind from birth? If she is cold, the house must be cold and she turns up the heat, not recognizing that her heart condition is what is making her cold - I must walk around in the house with a t-shirt on but she will not wear more warm things or even sit under an electric blanket because she does not like to feel "bundled up". If there is a light breeze, the wind is blowing awful. if it is sprinkling, it is raining hard, if there are intermittant clouds, it is gloomy. She would only be comfortable in one of those hermetically, climate controlled chambers or bubble. It has been a life long thing, she did not like eggs or milk, therefore nobody else is allowed to like eggs or milk (even to the extent of making retching noises if I make myself eggs. She is self-conscious about her ears since a little girl in her class when she was about 8 said she had big ears, so she cannot go out of the house whtout her hair being arranged over her ears because everyone will see her big ears. To watch a movie on TV that has more intellectual content than a Fred Astair/Ginger Rogers is so far beyond her, she cannot watch anything I like without making rude comments about the plot, the actors or anything unless I yell at her to be quiet or (abandon her and) go upstairs or downstairs to watch it. (I am reminded of a character in Jane Austin's Mansfield Park who admits that she is selfish, but she must be forgiven as there is no cure for selfishness".) Says it all. It goes on and on, I could write out a dozen examples, but they are just something I have grown up with. Long and short of it, she is not a logical person and a 'contract' of treatment would mean nothing to her. But I can deal with that, it is the others that prompted me to vent with the original question. Anyway, thank you for your supurb encouraging words of empathy, jeanniegibbs.