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There is so much I don't like from my past experience that I won't go into it here. Yes, it sounds like you have a very toxic relationship that must go. I personally would not stay in such a relationship from your description
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Reply to Dad_Was_Robbed
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cdnreader,
Sorry for your loss of your Dad.
I completely understand the invisible part. That feeling goes along with not feeling heard. People are rarely listening, and then, only hear about 75% of any conversation with good hearing. I don't know if reading is different, but wanted you to know I heard you! If you stick around, your presence will be acknowledged, people will identify with you and where you are at right now.
Maybe others will click "follow" on your wall, and when you speak up, you will at least be read by others, and others on the forum have lost a loved one. Yes, it is hard to read when others are still going through what you have. There are threads, if you have seen them: "Loss of a loved one",
"Love notes from caregivers who have lost someone", Life after the loss of a loved one"- or similarly worded that will come up in the search bar.
I am so glad you did not actually disappear, and feelings can change over time. So keep reaching out if you can. I love it when others write just what I was about to, so then it saves me time. You have put into words feelings that I have carried for just a long, long time.
Hoping someday that you get the validation you are seeking, hoping it just comes to you that you are loved.
Give yourself some time.
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Reply to Sendhelp
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Thinking back before my dad passed. It was the feeling of being invisible. Of being taken for granted by everyone. There was no validation or acknowledgement of my time and efforts. It was hard. Feeling like everyone had a life that was free of responsibility. And here I was feeling stuck. Stuck being the responsible one. Stuck being the good one. Terrible cycle. I wish I had found a way to break it sooner.
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The denial of other family members is the hardest for me because then they are not only unhelpful but make everything more difficult.

Second, is the distrust of the patient. She regularly tells others how I can't be trusted with giving her the correct dose of Coumadin even though her doctors repeatedly try to assure her that I have a better idea of what she needs than they do!
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Reply to Peace516
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During winter the first year I was so overheated I passed out from heat exhaustion and woke up face down on the floor. The living room got to over 90 degrees while the bedroom where grandma was was a cool 82. I was in the living room scrubbing a pee soaked chair with woolite. I don't know if there is a higher power in this existence but I think something looked out for me and prevented me face-planting into the pee spot.
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Reply to TiredReader
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Tiredreader - I wanted to laugh at your post about the hot house, but I know it isn't funny. I totally relate! One of the (long list of) reasons I won't live with my mother is the infernal heat in that house! When I lived there, I kept a separate window air conditioner in my bedroom which kept it comfortable for sleeping, but of course you don't spend your day sleeping when you're a caregiver. The time I spent cooking, hauling in groceries, cleaning the kitchen, doing those endless little "handyman" jobs around the house - I would be dripping with sweat. I hate hate hate a hot house, especially when I have to be physically active in it.
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Reply to CarlaCB
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Wait no! How could I be so stupid. The heat. The intense heat all year long. The scorching heat where I cannot open a window or lower the thermostat. This small home in metro Detroit is responsible for 34% of global warming. There's a hole being gouged in the atmosphere by the inferno that is thus.
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Reply to TiredReader
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People thinking I have it easy.

I hear others saying "I wish I could stay home all day" or "its ok he's watching grandma he's not doing anything"
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My newest answer to this.. The lack of empathy of her son and daughters that don't bother to visit, call help in any way. Just p!sses me off. My husband -Her grandson and I take 24/7 care of her.
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BTW, they say preventive health saves lots of money. You can't prove that to me. Doctor bills used to be low and infrequent. Now there are a lot more doctors, a lot more tests, and a major portion of the nation's economy going to the healthcare system.
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Reply to JessieBelle
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Momsgoto, I so agree with you. I've had three "preventive health" doctor appointments for myself this month. All three said all is fine, nothing wrong. Blood work perfect. No diabetes. And you know what? If they had just asked me how I was, I'd say fine. It took some hundreds of dollars -- insurance thankfully -- to give the same answer.

I really feel that they put people on a healthcare assembly line now. It keeps churning out the money for the insurance and healthcare companies, which have gotten huge. I remember a time when we went to the doctor when we were sick. Now we can't even get an appointment when we're sick, because schedules are tied up with follow-up visits that are scheduled every 4-6 months. But WHY?? If we do get sick, we have to go to urgent care.

The healthcare system is really silly now. My doctor wanted to do a bone scan on me. I declined and said there was no reason to, since I wouldn't take the drugs and I eat well. She made me feel like I was non-compliant by refusing the test.

I get tired of them looking for all these diseases, making sure you're clear. My great problem, I guess, is I don't have an overwhelming desire to live until I'm 100. I know what being old and being maintained by pills is like. I want to check out of this life before my mind leaves.
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Reply to JessieBelle
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YESSSS! A thousand times YES! All those Drs appointments! Some of which are totally unnecessary for health reasons. more for the billing reasons. I am so tired of it. Our healthcare system is run by the insurance companies. Not the other way around. I can't keep up sith my own health because of taking care of my parents. And you are correct. They didn't have to do this. Their parents were dead long before they started aging themselves. Meanwhile, we are smashed between working two jobs to pay for our kids college and caregiving to ungrateful parents who want it all their way. I've really had it!!!! Somebody stop me!
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Reply to Momsgoto
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When Drs and Home Health therapists tell you to get your parent moving, what exercises they should do, etc., and what to do on days when they are not there. All their appointments they should make. Then you try to do it, and your parents fights you or says they don't want to do it. This is my mother in her 60s after her stroke, leaving her left side paralyzed. Insurance cutting them off right before they have a chance at making progress. Our health system is ridiculous. The other disabled parent drinking all day, and wanting her laying in bed all day because it's easier for him to handle. Then he makes us drive around all week to his Drs appointments, and he doesn't even help himself to get better, and expects us to be his servants. If this is how our health system approaches the end of life, I would not want this for my kids. They are already helping with their grandparents who don't want to seem to get better. It's hard for loved ones to see their elders go through this. They didn't have to caregive for their parents. We love them, but at what point should our seniors be helping themselves, if they can? So much wondering if we are doing enough?
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Reply to Paul111172
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The smell. No one warns you about the freaking smell that nasty putrid smell. I get that she is too cold to shower. I understand that she is afraid of falling. But stray cats are starting to gather around the house.

Nobody warns you about the smell.
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I know exactly what u mean. My dad will give the guilt trip. When he needs or want something he wants right then and there. Like he wants a ride and don't jump right then. He will say OK then u want me to walk and fall and it's cold outside u want me to freeze. He thinks of himself only. If he wants to eat he wants it right then if not he will say OK u want me to starve. If he don't get his way he will say I will get an apartment in a gang neighborhood. He doesnt pay one bill or grocery or give me a dime. He gets ssi check and blows it all on lottery. Since my mom passed away in 2010. I've been taking care of him. He threw away 66,00.00 on lottery. He's my step dad and tells me I'm not his real daughter. He drives me bonkers and I'm scared that he will make me snap. His own biological son doesn't want to b around him. How did I get so lucky to adopt him. Answer is I'm doing it for my late mother and I feel so sorry for him cause he's old. I don't work or have a social life cause of him he needs 24/7 hr. Care cause he is paralized. Also tells me he eats apple a day that I have peel and slice for him so he wants to live up to 121 yes old. He wants to b the oldest man in the world. Yeh!! Me. Feel bad for all of the the people who r in my shoe. Taking care of an old person is worse than taking of a child.
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Reply to Suetoth
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oh mom2mom! I feel ya! I am constantly trying to figure it out. The things my mom has done! I'll spare you the ugly details. At the core, it really doesn't matter why they are acting out or manipulating or avoiding or lying. The end result on us is the same. And we need to care about ourselves enough to protect ourselves and heal. I am burned out.
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Loss of the simple freedom I had. the thought that I OWE my mother this care...per her. well there is more than one thing but I don't want to carry on.
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Reply to Logan179
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My mother passed the mini mentals too when she was already showing signs of dementia. It is a grey area where GPs seem to think they are fine despite reports from family. When mother was finally thoroughly evaluated by a geriatric psychiatrist, OT and psychologist, it became very clear that she was suffering from vascular dementia.

The point of having a proper diagnosis is several fold.
Here are points from the https://www.alzheimers.org.uk/info/20071/diagnosis/104/why_do_i_need_a_diagnosis

Why do I need a diagnosis?

A thorough and timely assessment for possible dementia is essential in order to:

- rule out other conditions that may have similar symptoms and may be treatable, including depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid deficiencies
- rule out other possible causes of confusion (eg poor sight or hearing), emotional changes and upsets (eg moving house or bereavement), or the side effects of certain drugs or combinations of drugs
- provide a person with dementia with an explanation for their symptoms, removing uncertainty and allowing them to begin to adjust
- allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)
- allow a person with dementia to plan and make arrangements for the future.

If the outcome of the assessment is a diagnosis of dementia, it is important that the type (eg Alzheimer's disease or vascular dementia) is also diagnosed. Knowing the dementia type will help to understand symptoms, predict how the dementia might progress, and suggest how best to manage it. For example, certain drugs will be prescribed for Alzheimer's disease (but not vascular dementia), although these do not cure the condition.
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Momsgoto, I could not agree with you more. I know mom has dementia and I know she has always been manipulative. I just wish I knew where the line is. When she is acting out, is it the dementia and deserving of my patience or is it her old self and not deserving of me.

Also, she passes the in the office memory tests and showtimes so her doctor thinks I am exaggerating. But why bother taking her to a specialist just to get a diagnosis of something I already know.
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Siblings not sharing n the responsibility equally. Also, feeling quilty when I just want this to all end. My mother's memory is fading and she asks me the same questions over and over. I know she can't help it and I should just answer her like it's the first time she answered the question but I find myself say, you already me asked me that and I told you, blah, blah blah. I can only take it so long then I let her know she already ask me. My mother is with me 4 1/2 month full time and relies on me the other months more than anybody else. I am getting angry with my siblings and it doesn't do any good to talk to them. I feel like my life isn't my own anymore.
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Siblings not sharing n the responsibility equally. Also, feeling quilty when I just want this to all end. My mother's memory is fading and she asks me the same questions over and over. I know she can't help it and I should just answer her like it's the first time she answered the question but I find myself say, you already me asked me that and I told you, blah, blah blah. I can only take it so long then I let her know she already ask me. My mother is with me 4 1/2 month full time and relies on me the other months more than anybody else. I am getting angry with my siblings and it doesn't do any good to talk to them. I feel like my life isn't my own anymore.
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Not knowing if this is just my narcissistic mother or some form of dementia. Mom refuses to see a dr. Primary care just shrugs and says she is fine. MMSE (mini mental state exam) score is normal. But I know there is so much more to dementia than this silly little test. I don't know if a diagnosis would even help. In one way it would ease my feelings that I am being used and abused by her. In another, it is very scary. But having that diagnosis would help us plan for her future. Cuz this girl is getting off the crazy train soon!
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Reply to Momsgoto
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Having to give out morphine and other drugs knowing it is the end of life!
"The comfort kit"
Haldol especially!!
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Reply to 1angelnblue2
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I read through this whole thread and found the answers very helpful (I wasn't on here three years ago). It helps to know that I'm not alone.

Where do I begin - hard to say what is the worst, the isolation, feeling like I will never have a life (as my daughter went away to school, next I have to take care of mom), the guilt over wishing I did not have to do this, that I could have a life, knowing that I am not good at this at all, getting impatient when she gets confused and repeats and repeats and repeats, feeling guilty because I hate cooking and housework and especially potty duty, resentful because basically my life is over (sorry for venting, but I'm already going through the anticipatory grief and realistically, after years of caregiving, there will not be much left), resentment over how my physical and mental health is so much worse (and I don't have insurance so can't afford to run up medical bills).

Often I don't know when I'm being self-indulgent in hiring more help or if I really need to do that to preserve what is left of my health. There are times that I don't do the chores both because I am exhausted and because I want to escape. And I feel guilty for that, and guilty because I really do not enjoy caregiving, but some day I will really miss her.
No one ever told me about this. Caregivers suffer in silence.
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Reply to Dana235
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A person suffering Alzheimer's can't help the way they are--it's a slow terminal illness. I keep everything on schedule which helps and I take her for daily walks with her walker. Seven days a week. So she won't get bed bound. I have a feeding and bathing schedule. Sometimes she refuses to do things I have to get very firm. I can't let her sleep all day or she will be up wandering all night and falling over. Yes it is hard but I remember I only have one mom and I'm glad she is still with me.
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Reply to cetude
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For me, it was the lack of validation and acknowledgement from my siblings. I did most of the work and I couldn't even get a how are you? I had a lot of resentment and anger about having all the responsibility. And I started to feel taken for granted. I couldn't even get a please and thank you from my own parents. They just expected me to be there and because I'm such a pleaser, I did everything. But in hindsight it was a terrible mistake because the anger takes hold and affected my judgement and compassion. I should have gotten help for myself sooner.
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Reply to cdnreader
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I didn't have to read the whole thing to realize you're dealing with a narcissist. I've had my own share of experience with narcissist and everything is about them and they care nothing about you or others. You need to drop them like a hot potato and cut them off and move on or even send them packing. They pick on the weakest link possible through a grooming process no one sees coming if they're not familiar with a narcissist. One thing to look out for is they will drain you financially dry and take all they can never get back. The only way to cut them off is no contact after cutting them off but you need a support network to be able to help you maintain the no contact order
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Reply to Dad_Was_Robbed
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Speaking solely for myself, it is obvious they are no longer the person who they once were. If they were kind and loving, it makes things so much harder for the caretaker to see what is going on with them. However, the aging process changes us and when they get abusive and nasty and crabby or ugly in other ways, and have no memory and do stupid things and repeat and repeat, I want to scream. That is when I draw the line and say no more - it must end - and I do whatever I have to do to stop it. That includes medications, counseling for me to cope, etc. but if nothing works, then I have no choice but to remove them and put them somewhere that they can be cared for by people trained to do this work. I personally cannot tolerate the ugly part of this problem - although I know there are people who can - they are saints if they can do it but not everyone can handle this. In the end you have to thing of YOU and what will happen to you if you don't take care of the problem. Are you willing to be destroyed?
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I wanted to add an edit. As much as I struggled with my Dads' entitled attitude and regretted the arguments, I would give anything to have another chance to help him. He passed away 10 days ago, and I am lost. I used to think that my life had been destroyed when I moved in to help him, but now realize that it is probably the best thing I have ever done.
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Reply to didntknow
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didn'tknow - I definitely relate to that. I had the same argument with my mother many times, and the infuriating part was that she would never acknowledge that she was doing it. She really does not know how to ask for something without making a demand. She really doesn't view the caregiver role as voluntary and something we do out of the goodness of our hearts; rather, her children are there to do her bidding and carry out her instructions, very much like when we were 10 years old and living under her roof. I have given up trying to make her understand the difference between a request and in instruction. The best I'm ever able to get is a polite instruction, such as "PLEASE take the garbage out right now." I deal with it by limiting my contact with her as much as possible, because it aggravates the heck out of me (to put it politely).
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