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

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I am 68, and have a few medical issues of my own (big one of fairly recent development). I came back here 12 years ago to originally see that she was able to stay in her own home and to 'look after her'. Since then her condition has deteriorated and my role has become caregiver 24/7. Should any adult male be happy pulling down his mother's pants so that she can go to the potty?There is no family around here who can help (at least that I can even possibly count on and trust) or her friends (who are mostly either dead or as old as she is) to help, we have no church or organizational affiliations to step in, her doctor approved hospice and they have been good for her and even have some limited resources for me for brief times out of the house, otherwise it is just me. If I had to take her to a nursing home it would have to be under physical restraints. By the way, everyone compliments me on how well I care for her, even her.

The problem is that everyone from mom to relatives to the hospice nurses treat me in reality like some sort of ancient family retainer or servant or fathful hound or something and I am completely disregarded, even though they effect a sincere-sounding attitude of concern. I am not talking about some free bone occasionally with the offer of a couple hours off, I am talking about a total attitude that my entire reason for being is just to care for mom, that I should be so happy to have my "dear mother" with me still, that "warm and fuzzy".feelings about being a caregiver are supposed to be enough. I do not feel "warm and fuzzy", my mom is not the "cookie-baking grandma" that everyone thinks she is. There is no time to form any local relationships here, even if I did meet someone I like to spend time with, I do not have the time so spend. Even to keep the appointments for hospice etc., they usually want to come at a time which I can get out of the house for a few minutes. When there are no appointments I am only too glad to collapse on the sofa and take a nap! but even that is not possible some days. I am tired, my back aches, and my nerves are freyed. If I were to have the operation that it is suspected I will be needing I do not know when I could scheule in the recouperation time. I recently had a weekend visit by my nephew, her grandson who lives at a long distance and I was more like a deskclerk and short order cook than an uncle. I was happy to see him leave, and I hate that. Life has just become one dreary day after another.

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Top Answer
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:)
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.
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.
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!
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.
Thank you Jeanne, for your very lucid response. There have been several incidents in which mom would be dead by now if I had not been here, not the least of which is just wasting away in some nursing home. You see, mom does not have a great deal of imagination, her home and her kitchen were her biggest diversions. She has not been able to contribute to cooking or cleaning for a couple years now, she cannot stand for any length of time because of the ostio or handle hot things or lift a boiling pot to the sink to drain it, it became just plain dangerous. I often let her help, we made apple pie a couple weeks ago, I peeled and cored, she sat and sliced and used her "head recipe" to mix, I got in into the oven and out. She has a difficult time giving her recipes because in her words, she "just does it". She cleans vegies and mixes frostings, etc. I am benefiting in that I am learning how she did things....In truth, I have not spent all 12 years caregiving, I worked until a couple years ago when they "obsolited" me. I moved back here from CA that long ago, but her decline has been slow and steady, with increasing low points. For the last 2 years she has had to use a walker exclusively and sometimes I have to get out the wheelchair. I carry her potty chair wherever she happens to need it, she has diminished control of her bladder and bowels so I must be quick. Just 3 weeks ago her doctor and I thought her time had come, but she rallied and is now at home again, but getting steadily weaker. She must be watched or someone must be nearby 24/7 or she would have to be religated to totally bedridden, which presents it's own problems.

No, our community does not have a separate facility for hospice like some more prosperous communities, it is all home care. Not perfect, but we are working through it and so far they have been lots of help.

As for whether I will stay here or not, I have not made any particular plans on that. When I bought the house from her it was with the intention of retiring here, I love the house and I have the garden as an outside diversion, and my hobby stuff in the basement, I grew up in this town but frankly have soured on it. For some 30 years I lived in a more urban environment and I crave too much that a small community in the middle of a sea of corn cannot provide in order to be totally content here, though much will depend on whether the real estate values recover, in this area they are rock-bottom and better homes than mine are going unsold so I may never be able to get away. All I have to say on that is that as long as I am mobile at all, there are many places in this world I want to visit, I would move back to CA if I have the chance but as I said, no plans at all. For one, because she keeps making these rallys, I have no idea how long my responsability will last (Ah! The big "R" word!...)
When I used the word "disown", I was in no way referring to disinheritance of finances. The word "renounce" is closer. You want more constructive ideas? I bet you have endless thoughts as to what you need to do for your Mother and still have a life. Have you ever presented the situation to Mother, herself?
From one caregiver to another, it is not necessary to state the obvious: you would not abandon her, you are not cold--most of us are too caring, especially those of us with self-centered parents. We develop our coping styles over the years to survive, and our personalities determine the presentation. I come from a screwed up background, DT. I am sorry if I offended you with my brusque delivery of bottom line advice.
Provincial minds are everywhere, and we cringe at worn out cliches and well-intentioned but ignorant remarks from outsiders. I have heard a few this last year, and if the reaction I gave let them think I was cold-hearted, I don't care. I know what I experience, and they can mind their own business next time.
I would like to have a better attitude about what I am doing: i.e. being the sole caregiver for my Mother without constantly griping that my siblings do nothing; and resenting that they resent my resentment of them! I am actually tired of hearing it after a year or so, and I know God is tired of hearing it. I struggle with this: if I am serving others--like caring for my Mother--does having a bad attitude about it negate the good? If I simply accept that this is the task I must accomplish and there is no one else available or willing to do it, then I prevent more angst.
I believe there is an answer for each of our circumstances, and sometimes it is 'acceptance.' Sometimes when we accept and relax, another opportunity presents itself. When you stop chasing the butterfly, it will light on your shoulder.
I don't know. I think tossing these things around and then giving it a rest is the way to find an answer. I'm really glad we have this site and each other to bounce things off of. All the best to you, DT. Hugs, Christina
DT, I was writing as you were writing. I see your additional explanation of your Mother's abilities. I try to imagine what it is like to not be able to do things one could do for years. It is frustrating and makes one fearful of loss. It is still difficult for the one caring for and watching the deterioration. I appreciate that in all of us, and my heart goes out to our loved ones. Take care.
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..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.

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