DT Asked November 2011

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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Eddie Nov 2011
CHRIS:

Girl, don't you dare leave me! ... We just met.

Anyway, if I had a quarter for every well-intentioned comment that was thrown back at me I wouldn't need a Xmas club account right now. And If the AgingCare Experts don't have all the answers, neither do we. Because there isn't -- and never will be -- a cookie-cutter formula for caregiving. So we take what we want to get what we need, make it our own, and keep on rocking. Our personal philosophies of caregiving are works in progress in constant need of fine-tuning and refinement.

I'm a businessman of hope in the pursuit of the wisdom it takes to be a better caregiver, a better man, a better person, and a better human being. ... And I won't be able to do that if I hole up every time someone doesn't like what I say.

So please, hang around.
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DT Nov 2011
Christina - None of us are perfect at putting words on a computer - even some renoun authors are still being discussed as to their underlying meanings and word choices of their writings. I know I use a lot of words and they often do not come out exactly as I would hope, so I hope I have not offended you. I sometimes think that if we were all given the ability to read each other's thoughts (empathy?) those of us alive would have a difficult time as we are taught to keep secrets from birth, but future generations would not have to put up with a lot of obsticles that we secretive humans must deal with every day. I suppose that does not make any sense, just a flight of fancy, but in no way did I mean to be offensive, I was just clarifying my posiion. You are as qualified in your opinions as anyone else here.
Eddie - I would like to hope I am, in your word - resilient - but I am just putting one foot ahead of the other. Great story about your - class(?) - to be able to walk in another's shoes is one of those imagination things I was speaking of earlier. Sometimes it is a learned talent, sometimes the need is never even recognized. One of my favorite things to say is that you can teach a lot of people a lot of things, but the one thing you really can't teach is common sense. Some in your class have a lot to learn aobut life.
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ChristinaW Nov 2011
For one, I will cease giving my opinion on this thread. I am not qualified. I read other thinyou'd couple of you get on your high horse about, and I just roll my eyes, but I would not criticize your comments by taking partial phrases and using them as an example. Ok? Happy Caregiving. Good luck, DT.
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DT Nov 2011
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.
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Eddie Nov 2011
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.
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jeannegibbs Nov 2011
Several people are responding to the "parent as manipulator" theme and the "how to set boundaries with the care receiver" question. That isn't what I hear in DT's post. I think the main issue here is the "loss of self when caregiver role supercedes all else." DT would like to be treated as an individual worthy of respect and compassion (which he certainly is).

Somehow I can't see that clarifying roles with his mother, either in writing or in conversation, at this late date is going to significantly change how the hospice staff, or his nephew, or the ladies in the community treat him. He is near the end of the journey. Mom is on hospice. After caring for her in increasingly demanding ways for 12 years, now that she is dying I can't really see him saying, "This is how you have to treat me or else I'm moving out." Huh? Doesn't make sense to me. Setting boundaries early in the caregiving relationship (to the extent that the loved one can comprehend and comply with them) is one thing. Threatening to withdraw the caregiving of a dying parent just makes me shudder.

Yes, we all need to take care of ourselves, and stand up for ourselves, and be proactive in our own physical and mental health, etc. etc. Somehow I just don't think the message DT needs to hear right now is to man up or stand up for himself or to write an essay for his unimaginative mother. Those messages might indeed be appropriate for other caregivers in somewhat different circumstances.

DT, I think that it is a verifable fact that releatives, professionals, acquaintences, and even strangers focus so much on the needs of the loved one that the caregiver seems to be invisible, or a nonentity, or some kind of servant. DT, you do not deserve that treatment! (And, of course, your mother does not deserve to be in state of poor health that she is in.) There is a lot in the caregiving situation that isn't "fair."

You have none a wonderful service for your mother for many years. I know you will continure to do the best you can for her to the very end. Let me tell you that you are a hero, NOT a nonentity. You know it and we on this board know it. I'm sorry that you have been encountering a lot of people who don't seem to know it, or who are too preoccupied with their tasks to think about acting like they know it.

Keep on keepin' on, in love. This isn't going to last forever.
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Brian101 Nov 2011
DT,

I know your situation all too well, except that I'm 25 years your junior. My identity's been co-opted from college English instructor to full-time caregiver. Far too often, in my mind I've constructed the articulate letter to my 84-year-old father where I explain that I've merited some regard and some respect, more than I've received these last 12 months which is Zilch (with a capital Z). It seems like it's only expected that I've pressed life's Pause Button and should be giddy living in the tiny quarters that have been afforded to me. I should be thankful for the opportunity to experience these last chapters.

I've got that letter fairly well constructed. I just need to hand it over. In it I ask my father to recollect his life and what he had to offer the world when he was my age, except that I never married nor am I saddled with any children of my own. I'm just supposed to live this isolated cult of an existence?, I ask. DT, you and I and every other person who's on this site, were not put on this earth to sacrifice our lives so that our elderly parents can have it their way until the very end. My logic to my father is "I'm your adult son. I'm trying to improve your quality of life. But when is someone going to take into account MY quality of life? Who is going to look after me when I'm in my 70s, 80s? I have no kids, and this dreary existence that my father's purposefully created (that I may've enabled; I accept that) is anti-thetical to introducing any chance of Love, Romance, and a shared life."

I've put an agreement in writing between my father and I. Having a written document accomplishes a number of things. One, he can reference when he needs to. Two, I'm able to completely present my perspective. He's got age-related hearing loss, so too often he misses a lot of what I say. And, like most people, after hearing Point One, in his mind he'll start to formulate his retort and miss the rest of what I'm trying to say. Three, by putting it in writing, we avoid the exchange devolving into a counter-productive argument where we laundry-list all of what we think we've done for the other ("well, you're saving money on rent because I'm allowing you to live with me" would be his first response).

Because of his end-stage COPD, I've agreed to move us to a lower altitude. But prior to that move taking place, he'll get that letter where I detail what sort of patterns have happened and which will no longer be acceptable. If I am going to continue to adjust my life, he's capable of adjusting his. I'm calling bullshit on the whole Old Dogs, New Tricks thesis. I will offer to accommodate WITHIN REASON. When his expectations or behaviors become unreasonable he will get the subtle reminder that he'll either while these last days on his alone and on his own or in the an assisted care facility. His finances ain't going to allow for a whole beyond the VA hospital, so I anticipate he'll have no other choice than to be reasonable as he's deathly afraid of the Old Folks Home dynamic.

Present it writing to your mother, DT. Explain that there's no other bond like the one between mother and child, that inherently it's hard-wired for you to do your best to look after her, but that your care-giving will only stay within the bounds of reason. Explain to her that you're not going to die when she dies, that you have a future of your very own. Explain that you're not going to wait for her to die to begin enjoying your life. Explain that everyone dies, including her. Explain that her expectations are unrealistic and not reasonable. Either she can change or, if she doesn't, you've done your part (multiplied by a thousand) and you have a lot of life to live. Either she can get along with you swimmingly or not. And "not" means you're no longer going to be in her life.

I genuinely wish you well. You deserve a life of your own. As do I.
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shamrock13 Nov 2011
Miss Millie...I am walking in those shoes and I was just making an observation ..I observed that you have a bitter tone..just sayin'.
And Yes DT...my mom never was a "friend maker" ..a loner you would say. I love her dearly and don't regret a moment of this journey....but yes I do have many "pitty parties" that rollercoast from crying jags to wanting to put my fist thru a wall to the only other way I know how to deal ...which is step outside and talk to my Lord . That is the only way I can re-focus. Each day gets harder watching her spiral away and it's only a matter of time...she may not even make her 87th birthday next month. I am exhauseted as you probably are as well..physically and mentally but somehow God gives me the strength to lift her and take care of her everyday needs. GOD BLESS YOU ALL.
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DT Nov 2011
Oh, don't be too hard on Milieannie - I myself have run the gamit of emotions since this thing snowballed to the point of interfering with my life. Sometimes I think of one of Susan Boyle's songs that goes 'I am who I am born to be', other times I am angry, still other times I feel trapped. I am still evolving. Millie - if you read my posts again I have covered the facts that we have few financial resources and have explored the services of Medicare, State, and local facilities about as much as we can, I agree that sometimes these services are so 'routine' as to render them cold and impersonal (hey, we are talking about goverment here...LOL) but we stil use them, and I do use the time to sometimes go out and get some other things done. Believe it or not I do give mom (who does not have 'dimentia' per se, just some loss of cognition as well as mobility) the rough side of my tongue when she gets too demanding, my biggest objection is that I am taken for granted by nearly everyone else, who I can't really give the rough side of my tongue. I really do not think most people can possibly realize what it is like to live with someone who even in her younger days has had very little imagination to make her see more of life outside of her kitchen. It was all she had. I believe we are in the same boat though - we are dealing and sharing. Thanks.
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@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.
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