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When I was a caregiver, I felt I was losing myself; the person I had been and the person I wanted to become. When I was my mother's caregiver, I placed her in an institution so I would not lose my job. When I was my husband's caregiver, I contacted hospice and was relieved when my husband finally died. Four years have passed since he died and I feel that my physical and emotional health are still affected.
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bookluvr Aug 2018
I'm not the person I was. After so many years of caregiving, I find that I'm scared of anything that's new. I think we're all going through PTSD. It's going to be decades before anyone higher up will admit that family homecare givers legitimately suffer from PTSD. Look how long it took before they admitted that those in the military suffered from it!
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NJNannie,
In my opinion, it is time to quit caregiving when it is taking a physical toll on your (the caregiver's) body/health.

In my case, I already have arthritis in my neck and spine and a worthless back after 40 years of being a nurse. So, when mother lived with us for 3 months (stage 6 Alzheimer's) and I was having to push, pull, lift, turn, etc., my back started screaming. In the end, it was her or me. I had to place her in a facility.
I can NOT loose MY health and suffer from now until I die. (She's 95 so I still have 33 years left!)
I'm afraid I had to draw the line. She has strong, young men and women as caregivers in the memory care facility taking good care of her. I have to realize my limitations and do what I can to keep the good health that I have. You do too.

Please consider placement for your Mom so you don't "break" yourself. Often, once something "breaks", it can't be repaired again. Your mother would not want to be the reason you are incapacitated. We have worked hard all our lives and we need to enjoy this time of retirement with as good health as possible.
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NJ- caring for our loved ones especially our parents is one of the hardest things we will ever do in this life. It is a very hard and difficult labor of love. It requires willing sacrifices, knowing that it is only temporary. Everything that we complain about now, we will one day regret when they are gone.
i am so sorry you are feeling this way, we all go through these feelings, it is rough.
I had and have very difficult times too. I have to continually remind myself what love means and not to be selfish.
I only get through each day leaning and relying on the Lord. I can do nothing on my own, as I will fail or mess it up.
I will keep you in my prayers and hope that you look up for your help and strength, because truly HE is our only hope in this life.
Hang in there.
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Genesis1 Aug 2018
Amen and Amen
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One thing? Oh my! Mom has been with me for six years now. I have become bitter. I have basically given up my life as I knew it only to hear that I am uncaring. My husband will be retiring in 4 months....if I don’t find a different situation for Mom by that time, I will have a breakdown. So, I guess the one thing that bothers me most is being tethered to my mother. I’m lucky if I can get out to see my grandson’s soccer games. She knows all of the guilt buttons to push on me and I can’t brush it off like everyone tells me to.....sigh. She’s 100% incontinent...can’t walk...my shoulders are shot from lifting her, etc, etc. Sorry, this is my first post...didn’t mean to say this much. So, again, my total loss of freedom is the one thing that bothers me most.
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bookluvr Aug 2018
I had your problem, too. He knew how to push my buttons. I recalled posting here that I didn't know how to let it slide off my shoulder. I think, in the end, I got tired of his enjoying hurting me. I realized that the more he saw that it hurt me, the more he continued to do it. I think, that's when I learned to Not show any emotions. It still hurt like h*ll. But, he got no enjoyment when I stopped showing he was hurting me... I also recalled that he would purposely get me angry so that we would have our 'famous yelling matches.' .. I think eventually you will learn - when you've reached your final limit.
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...no one wants to help, but everyone wants to criticize. Two of my aunts recently had a gossip fest about my mother's care, but they never bother to visit and see firsthand what a great job hospice, a private caregiver, and I are doing day in and day out.
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bookluvr Aug 2018
Oh my gosh! That's soooo true! My brother-of-next-door's father-in-law had the nerve to tell me that I needed to do more for my parents. Yet, none of my 7 siblings offered to help take care of mom at that time! It was just me and my dad taking shifts... Then my brothers from the Mainland watched me change bedridden, vegetative mom (I had to stack pillows on top of her while she's lying on her side so that I can clean her butt side.) Neither brothers offered to help me. They just sat there watching. Then older brother said (while I'm struggling to clean her): "You know, there's a better way to do that." … I snapped. I stopped. Turned to him. Extended my hand with the baby wipes, and said, "Do you want to take over?" .. His mouth clammed shut, and he shook his head.
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The wealth of misinformation to wade through as you are taking care of things.
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That it's constant. There is no break, no rest, no end to the care. My mother was never what you'd call a nice person. No self-awareness, narcissistic, angry and bitter. These issues are to the nth degree now with her cognitive decline. She does nothing for herself other than go to the bathroom. Lays in bed all day watching TV. I'm struggling to cope with my own depression and that of my Dad's who is also elderly and dealing with her issues.

Dementia is a sucking vortex that destroys everything in its path. The only one who isn't miserable because of it is the one who has it, in our case. It's just a hopeless situation.
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Hardest thing for me has to be the isolation. The feeling of being alone. Having said that, I am astounded daily by how many people suffer from dementia and how many family members are basically in the same boat as I am. I work full time and I care give for my mom (age 85 with vascular dementia), so there really is no "Me time." There is no help from my family. I feel like I'm on an island.

Good things? The memories I am making with my mom. The sense that I am doing what I should do, that I am giving back to her for all she has done for me throughout my life. The appreciation I have for 10 minutes with a cup of coffee that I took completely for granted. My mom reaching for my hand when I am taking her for a drive and holding my hand as we drive in silence. The times she tells me she loves me and she is blessed to have me. The patience I have grown through this. The ability to see things "for the first time" through her eyes. The fact that I never had kids, but now I have a small idea of what being a parent is. I could go on and on. These are enormous gifts I have been given and the lack of time for me, the isolation, the feeling of being alone? I can handle these because what I am getting back is priceless.

Some days I don't think I can go on, and then I do go on. Sometimes I take it one day at a time, but I keep on keeping on. When I stop a moment to think, I am truly blessed. My mom and I have always been close and this has served me well throughout this time. My mom continues to be the kind, sweet person she has always been and for that I am grateful. Sure, she has bad moods, but hey so do I, so do we all. We are all human.
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bookluvr Aug 2018
Your situation sounded like mine when I was caregiving my parents. The work, isolation and towards the end, just taking it one day at a time. I recall towards the end of the day, I would be singing to myself the chorus of One Day at a Time, Sweet Jesus... One day at a time, sweet Jesus. That's all I'm asking from You Just give me the strength to do everyday. What I have to do. ..

I still had my full time job. I changed both of my bedridden parents' pampers every morning - all by myself. Mom was completely vegetative-state, on oxygen, tracheal and stomach tube. Then at night, I change their pampers again, clean mom's tracheal tube, etc...

I'm really glad that you have a job to help keep you balanced. It really makes a difference!
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That within a year my 94 year old fully independent dad turned into my 94 year old toddler and I now have full responsibility.
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24 hour 7 days a week non paying,uncaring job that no one else wants. No respect and no help. I dont like mom either. I have no life no time for me. Getting meaner and fatter day by day. Is this what retirement is going to be like. Im going back to work.
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Kimber166 Aug 2018
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Ack! I thought my husband was the only selfish dementia patient on earth! It drives me CRAZY. Saying sorry is as foreign to him as remembering his grandkids birthday. I call myself SuperGirl because I can handle anything...but this.
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Today and every day, I feel the same way.
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smeshque Aug 2018
The positive to that is that your feelings could have changed for the worse. But if you are feeling the same everyday, you are maintaining. It could always be worse.
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My dad has vascular dementia, and completely focused on himself for past couple of years. I explained to him last year I couldn't take him out with me because I had had an abnormal mammogram and had to go for a follow-up, my mom and aunt both had breast cancer and mastectomies. After my second test came back normal, his response was a flat chuckle and "well I guess you probably thought you were a real goner huh." Then he just went on about himself as if nothing happened. He's always been self-centered, the dementia just accents it and reminds me I'm doing this out of love (not emotion) and a committment to being his POA, for no reward whatsoever from him will be forthcoming!
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CharK60 Aug 2018
So sorry for you. Hard to not take it personal. You are a better person than me, that’s for sure. Glad you’re results came out ok. That must’ve been a helluva scare!

charlotte
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What’s bothering me the most right now is that my husband constantly thinks he is going to die after visiting the doctor, getting a diagnosis (or after remembering again that he was diagnosed with something).

It’s almost every day that he tells me in all seriousness that he thinks that day is his last. He is convinced that he is dying even though there’s nothing actively deteriorating other than his memory. I want to tell him to get a grip! He’s a doctor. He should know better than me.

Is it his wishful thinking? Is it a premonition? Is it a stage of dementia? Whatever it is, it’s exhausting for me emotionally. It’s been going on for over a year, but has intensified to being almost every day.
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JuliaRose Aug 2018
Me again. I realized this has been going on for a lot longer than a year. More like on and off for 4 years!
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They are taking good care of my elders so, nothing bothers me.
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Don’t feel ashamed or alone.... I think their sense of entitlement gets to me too. I have always had to go along and get along... no one sweeping up after me
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MIL and ALZ...SIL who calls and tells me what to do.
DH and Vascular Dementia and depression [with other issues] ... SIL calls and tells me what I should do for her brother.

Stepdaughter who calls her dad once in a great while but figures he is okay if she doesn't see him ill.
Can't visit, can't offer me a day off.

So family members that are clueless bother me while caregiving.
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Right now it’s my husband who is getting on my nerves. My mom with dementia has been living with us for nearly a year. He talks down to her and treats her like a 2 year old. No matter what I say to him, he believes she has to be told what to do and what not to do, and corrects her at every opportunity. Mom is very hard of hearing (thank God!) so sometimes she doesn’t hear him, and when she does she forgets what he said but she still has the “feeling” that he doesn’t like her. I try to keep her in a calm state and she seems much happier, but when he’s around she tends to get anxious. It’s maddening.
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Lostinthemix Aug 2018
I think your husband and mine must be related. Mine does the same thing to EVERYONE, because he's so PERFECT! So he thinks.
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I hate that folk come around once every quarter and want to tell you how to do things. You don't care, or at least you don't act like it but you have all the answers. In my situation everyone has something to say and they have no clue!! If you came around more than 4 times a year (or to other folk - when you want something ) you may know more than only your selfish wants and desires. Then try to turn the sick one on the caregiver!!!! I am so over this whole thing. I have been looking after these folk for almost 13 years and just recently everyone shows up and tries to tell me what I am supposed to be doing. I'm over it!! It's to the point where I no longer like my family. Love them. But DO NOT LIKE THEM at all. lol
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Hope72 Aug 2018
I know that is a tough one, but l think that is there way of contributing, without having to work...give them a job, take a vacation for a week....family will get over themselves, an you can get better at delegating work when family shows...take mom out to lunch...she will love that an so will you!💝
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I know that this a serious forum about serious issues, but as a caregiver for a partner with dementia, accessing this forum for the first time, your post actually made me laugh. I really don't laugh a lot these days. Thanks! Can relate totally.
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Not just one thing anymore.. I'm so depressed.. can't eat sleep relax etc... constant crisis mode even with help here.. she's so damn needy..yeah bs... this has got to stop or I'm going to collapse! Ready to move away and leave her on her own! I didn't sign up for this sh*t!
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Hope72 Aug 2018
Willma...Past time to take a break, get help in there, so you can get away. Before you come back, have a game plan together how you are going to deal with her differently or if you can't, that's ok too, then its time to put her in a home an visit when you want to see her. Wish you well Willma, caregiving is not for everyone....💝😌
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My father's determination to be miserable. I nicknamed him "mope man" at one point. I could go on and on about it but I'm sure it's nothing new for people here.
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sidelined Aug 2018
that name made me lol!
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I know how you feel. My husband doesn’t recognize when I don’t feel well. And the. He says “no one pays him any attention”! Sometimes I could scream!
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Thank you frazzled for your reply
It may be that we share aspects of life regarding mothers. I am still not in the hang of this site but if you ever want to talk more I would be glad too. My family cant really offer me more as they feel I should at 62 know my mother well enough to not expect more. Sometimes are ok and others leave me just wondering why and how it had to be this way. I too dont know what it would feel like to have a version of a normal mother. I recall being asked once about going through a difficult time and being asked if I didnt just need my mother and quickly replying no. Forgive me if this is a repeated story. I have tried talk therapy but was told how grateful I should feel that my 3 children turned out well. I am but I pretty much alone have to deal with my mother. Its calm today. Was awful a few days ago after a bladder test
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FrazzledMama Jul 2018
Yes, the new site is confusing. :(

I can really relate to what you're saying. My mom has mental and memory issues, and she is just not capable of really filling the mom role, hence it's fallen on me to sort of be mom to myself and her. I have the same feeling about needing my mom in a crisis. If anything, my mom often IS the crisis lol

Glad today was at least a calm day for you. I know there are days when you probably want to pull your hair out. Are there any caregiver support groups in your area? I've thought about checking out some here, just to meet with a group of like-minded people locally who know what it's like taking care of the elderly and disabled.

And this site has been great. It's such a relief just to know you're not alone.
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It makes no sense because my mother has always had issues dealing with reality. I tend to put that on myself since am an only child and I wish she could have cared for herself more which might have meant I was important enough to her for her to take better care of herself. I am talking about decade old issues. Now at her age it is somewhat too late. I am fortunate in that she is not mean but I have dealt or had to acknowledge her health issues since I was 10. Back then she spent months in bed and I asked her if she was going to die. That has lasting effects. She could rebound and then take to bed again for long periods. It has left me with a feeling of not being worthwhile enough for her to care about me. I know its her issues but my life. I have struggled with depression for years and believe I will always need medication for it to live my life. She is truly declining now which is of course sad. Once she is gone I feel I will wonder what more I could have done but she resists efforts from me to help her with issues I think important and I dont know how hard I should push. We are very different people with different value systems. Not really a question unless anyone has a suggestion or offer of advice for my mental state on this.
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FrazzledMama Jul 2018
I'm so sorry, Riverdale. I know it hurts when your parent is not capable of loving you as you deserve to be loved. It sounds like in many ways you have been the parent and she the child. But this is not your fault. You are not worth any less because your mom has made the choices she has made.

Some people just aren't capable of being the loving parents that they should be, and sometimes it's mental illness, dementia, or another neurological reason, other times addiction, etc. but that doesn't mean the child is unloveable. It's a reflection of a broken mindset on the parent's part. I have a mom who struggles with mental illness and I too have always had to be "mom" to my own mother, and I know how hard that is, especially when some of my friends and people I know actually have "normal" moms. I seriously wouldn't know what that (having a normal mom) is like.

Do you have a therapist you could talk to about your relationship with your mom? I think it would be very helpful for you in taking care of your mental health to work through it with a counselor. Mine has helped me a lot.

Please come back and stay in touch and let us know how you're doing.
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Elizabeth, you got it; she wants all your attention; it's all about her.... Just go about your business and do what you decide you can for her; same as I have to.
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Elizabeth1114 Jul 2018
Thanks Mally1!
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What I hate most is that she treats me as if I'm 10 years old. As soon as I get her to bed and try to go out and socialize with my friends, she will wait an hour and then start calling me. She doesn't have dementia but I think she wants me to devote my life to her. I've told her that even home health aides get time off. I'm no longer affected by the crying because I deserve time to myself.
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sidelined Aug 2018
You got that right! Don't cave
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Praying mom will LOVE daycare...if we pass thru all the requirements...have to hire caregivers with her tiny savings as well. Cortisol levels so high my life is on the line now. Not fair we give up our lives to caregive and now our own lives are in danger...
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Exhaustion, mom's constant criticism, reliving my nightmare childhood. The most expensive disease! Where is the help for us?
Will all millionaires please step up and help out?
Not enough memory care homes. National Epidemic !
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I meant my father has mentally abused me all my life.
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