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I'm so tired of reading articles about how we're supposed to treat our LO with dementia. I bet I could find over a thousand articles on this site alone. And what are our guidelines as caregiver? Walk on egg shells all the time while their disease steals our lives. Is it some martyr complex people get off on? I don't get it. This is the most miserable life and I could never have imagined how hard this would be. If I could have imagined it, she'd have been in a memory care facility years ago.


Her dementia is killing me. And I know for sure that if I ever get diagnosed with this beast of a disease, I won't put anyone through taking care of me. No way.


I'm venting and angry tonight. It feels like there is no end in sight.

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EO, great big warm hug!
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Well, apparently you've learned lesson #1 in dementia caregiving... there are no guidelines, no caregiver manual, it's all OJT. When it gets beyond you're capability you look for a care facility. It's not doing you or your mom any good so place her where she's cared for and regain your sanity.
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I really needed to see this today. Thank you. I am totally fried and have had less and less patience for others' judgments when they're not here in this house dealing with it every day.
Solidarity, my friend!
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I am really relieved to see others feeling this way. Nobody sees me cleaning up & changing my husbands “ special underwear”, watching him sit on a 4 wheeler in the sun for hours trying to figure out how to start it. (It certainly wasnt my idea). Arguing about everything. I’m new to this site but I read everything and its so helpful to me. Thank you all for the encouragement & understanding that this site provides
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ExhaustedOne,

Vent away! Rant, rave, punch a pillow, scream, kick and yell!

I think everyone on this site that has actually done hands on caregiving has felt exactly the way you do at one time or another.

Those who have had loved ones in facilities have had challenges too.

Some people on the forum have parents at home alone because they are too stubborn to go into a facility and barely let their children care for them.

All caregiving is difficult but situations like yours are especially difficult.

I applaud your honesty. I truly do.

Caregiving is one of the toughest jobs in the world, even without a progressive or difficult to treat conditions such as dementia, Parkinson’s disease, mental illnesses, etc. Meds can’t cure these. The fact is, there is no cure. I certainly pray that one day there will be a cure. Being a caregiver to someone with these conditions is a tough challenge. So, I feel for you.

All I can say is that I feel that you are paying the price for continuous exhausting work! People invest heavily into caregiving without receiving a reward in return. Often times, the opposite occurs. We become physically and emotionally bankrupt.

People who say it is rewarding are entitled to their opinion but that doesn’t mean that there isn’t a great deal of pain that goes along with caregiving. I personally found more pain than rewards towards the latter part of my caregiver days.

If you feel like you’re exhausted all of the time, as you name says, then you may be approaching burn out. You aren’t alone. Many of us reached a point when we could no longer be productive in our lives.

If this is true, stop pushing yourself. Seek help any which way that you can, either from this forum, a social worker, the medical community, a therapist, clergy if you are religious, etc.

Sorry, I didn’t think to read your profile. So please tell me, is your mom at home with you or in a facility?

What do you feel that you need most at this time that would improve your life? What would be helpful to you? Speak your mind. It’s okay to be angry. Anyone in your shoes would be upset.

By the way, most people want to help. If you come across advice that you disagree with, disregard it. One step at the time. Nothing gets resolved overnight. As long as you are moving forward you are going in the right direction. Keep reaching out. Something somewhere will speak to you.

Wishing you all the best. Take care.
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I love your answer! No one knows what you are going through if they are not there.

Hope you are able to get some rest soon. Take care.
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Where is it written? Sometimes it is engrained in our brains by folks that want children to provide care when they become elderly. Sometimes it is guilt from siblings especially, that want their inheritance preserved while we provide the care. You don't have to do this to yourself. Boundaries.
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Sounds like you are long overdue for some much needed rest. All of us caregivers on this site can certainly relate to your frustration. It's not easy being a caregiver. No one ever said it would be, but for the majority of us, we do it out of love for loved one. And sometimes that love looks like keeping them at home, where we can look after them, and other times it looks like placing them in a facility where they will receive care from others more qualified than us. Either way, it's called love.

It also sounds like you might be at the place where your love brings you to the place of putting mom in the nicest facility you can find for her, so she can get the help she needs and you can get the rest and break you need, so you can get back to just being her daughter. May God bless you and keep you.
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It's not. But it is written in stone that you must look after yourself. Start looking for a suitable facility. This is a 24/7 job for professionals. You need a break and soon. Up to 40% of caregivers die before the one they care for.
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my dad -87 was mostly ok 8 months ago - now terminal and bed bound - last year I tried my best to get him and mom-85 to make some changes for the future explaining how much stress everything was on me, only child and single. They have tenants and live in a two story walk-up - neither of them had to deal with aging parents for both one that died early and the other living in Europe. I tried my best to explain that we need to make things more manageable for the future - his response was that's the way it has to be. He is now in a rehab and at some point coming home which will all fall on my shoulders. I am besides myself and totally overwhelmed trying also to explain to her that some changes need to be made for the foreseeable future but no interest in making any changes. Everyone one wants their independence however when you are in your 80s someone else is usually supporting half that independence at a high price and you are fooling yourself.
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Failure to plan on their part does not constitute an emergency on yours.

Only if you let them continue to use you can they get away with it. Stop propping up their false independence and see how willing they become.

Loving parents do not put their children in a position to become a statistic and that is what your parents are doing by their stubborn refusal to face reality. Tell them that 40% of all caregivers die before the person they are caring for, do they really want you to die 1st so they don't have to change anything?

You are no longer a child that has to follow orders. You are an adult with choices and you can make decisions for yourself, regardless of how they feel about it.
(11)
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I so understand you! And actually this happens to me even at work. Too kind, too responsible, too willing to help. Now I have too much on my shoulders... I will change! We have to learn to say no, without justifying ourselves. We must protect ourselves and not because our LO needs us but because we have the right to live our lives and be happy!

Btw, it happened to meet another woman who takes care of her mum in the supermarket. She asked me if I ever loose my temper or feel depressed when I said yes she thanked me as that relieved her, she felt less guilty and more normal - she did say!
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Like I told my relatives, who said my mom was very independent, I said, if she relies on others to bring in the mail, take out trash, take her to appointments, and do her grocery shopping, she is not independent.
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Maybe Dad should go from rehab to Skilled Nursing. If parents own property then u may want to consult with a lawyer well versed in Medicaid. Mom can become a Community Spouse and have enough money to live on.
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I don't know about the articles on this site but you have never heard another member on this forum say they have not lost it with a LO. If you haven't, then you are a Saint.

Not all of us have the patience to be Caregivers. My Mom was with us for 20 months and she was easy compared to some of the parents you read about. It was the bathing and toileting that got to me. I am five ft with no upper body strength. Mom could do but still needed help getting up and down. It did a number on my lower back. I was always afraid she would fall in the shower. Hated cleaning her up. It was never to be permanent, waiting for her house to sell. I placed her in an AL where I think she was happier and adjusted well.

I don't like it when someone says "they took care of you". True, but there were two of them. A lot of Caregivers do it alone 24/7. And usually its a Senior caring for a Senior. Maybe its time to place Mom.
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Please recognize and honor that you are human, with limitations. You tell you that you are only venting, but it sounds like more. It sounds as though you recognize that this cannot go on without risking your sanity and your life. Please take the action you must. You mention martyrs. We are not Saints. Saints get filled with arrows, killed, and then prayed to so they can fix everything for us. Some things can't be fixed. I am so sorry, and I encourage you to reclaim a life, and find the best care you can for your loved one, be what support you are able in visits, and reclaim a life.
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Last night my bedridden mother that is non verbal except couple of phases, started in on her picking (violently trying to rip sheets, under pads off the bed and pinching herself with her good arm) yelling “one day” and “water” over and over. Made snow confetti out of her diaper, that was dry and just put on.

I calmed her down over the course of 2 hrs or fit just ran its course, but had to walk away twice because I was loosing my mind. I actually yelled one day you will not be in this madness and walked out.

it’s ok to have emotions, even saints have their moments.

durning these times of frustration I often wonder if magic pills/surgeries to extend our lives are doing more harm then good to our LO.
(25)
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Ohlas1,

So sorry that you had to go through that whole ordeal. Life as a caregiver can be h*ll on earth!

I sincerely hope that all caregivers find rest and peace as soon as possible. Some people are hanging on by a thread!
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I understand fully how you feel.  My husband has Alzheimer's and all I could find was articles on how to handle all these different behaviors (along with all my other responsibilities).  I thought the same way.  "Am I suppose to be a martyr, give up my life?"  I was walking on eggshells, not sleeping, and prayed to God to help me.  I did have help but my LO became abusive and ran her away.  I decided I needed my life back and placed my LO in a facility. I had to stop feeling that I had to do it all and be a martyr.  Placing my LO for me does not diminish the guilt I feel but I now have my life back.  As time has passed, I feel my LO would understand I did what was best for him and me.
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I am high-fiving you based on the post’s title alone!!
(10)
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Another high five from me!
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A big high five 🖐 from me also!!! A great big hug 🤗 to you also!!
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Dear ExhaustedOne,

(((hugs)))  We hear you and you are so right.  It can be one day or 10 years or 30 years of caregiving, but it can and does take a toll.  I hope you will consider some respite care or making alternate arrangements.   I tend to ignore my own feelings but it lead me down a dark path. In hindsight, I wish so much I had asked for help sooner and recognized I was not a saint or a martyr. I shouldn't have tried to do it all...it was a mistake.

Thinking of you.
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Quite often, when commenting, I like to remind the person posting a question that his or her life is just as important as their loved one's life! Sometimes, we get SO caught up thinking that 'their' life is more important than 'our' life because they are sick. Well guess what? We're all created equal. Your life is just as important as your loved one's life. Just because she's got dementia doesn't give her a 'free pass' to kill YOU or to destroy YOUR life. The horrendous behaviors that go along with dementia are generally too much for someone to handle at home, and so, a Memory Care ALF or a SNF becomes the only viable option. It's not a 'sin' or a 'crime' to place a loved one in such an environment, either..........despite what some of the guilt inducers LOVE to tell you. In fact, how is it such a fabulous and wondrous thing for a demented elder to live at home, with no entertainment, nobody her own age to canoodle with, nobody to gossip with, no crafts to do.............and so on? An ALF provides a cheerful and busy atmosphere for the elder filled with ongoing activities designed specifically FOR them. Caregivers to look after their every need 24/7, even in the middle of the night. My mother lives in a Memory Care ALF and let me tell you, she's more than 10 people can handle! It's worth every PENNY she pays to have her living there and cared for the way she is, and to have MY sanity saved by having my house to myself and my husband.

I still call her daily, see her weekly, take care of all of her finances and doctors and specialists and tests and hospital visits and rehabs.............trust me, it's PLENTY. It's not like once you place your mom you're finished. You're not. The only thing that changes is that she's out of your house and you have time to yourself again. You deserve to have a life of your own and she deserves to have a life of her own as well.

Consider placement before you DO die too young. The statistics on such things is terrible.

And I'm with you. If, God forbid, I get very old and need care, I will NOT put any of my children through the task of caring for me (or my husband). Colorado is an assisted suicide state and that's the route we'll take. We'll bow out with grace and dignity instead of crucifying our own children in an effort to live a little longer........at THEIR expense. Not happenin'.

Wishing you the best of luck and the courage to CHANGE your predicament.
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Lea,

Interesting about Colorado being an assisted suicide state. I think all states should be.

I realize this goes against my Catholic upbringing but I don’t agree with the church’s beliefs on this topic.

I respect all faiths but I feel that each individual has to follow their hearts according to their own circumstances.
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Yes, we all keep hearing about our earthly caregiver Angel Wings, and our altruistic quality. So glad you are venting with this group. You articulate your feelings and many of our, perfectly. The best I can offer is empathy, agreement and a cyber hug.
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I hear you, no one wants to live in these conditions the patient or caregiver. There should be a law like there is for our pets, knowing there is no recovery, only decline, we should be able to put our LO out of the pain!
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I know exactly how you feel . I think I must be the most disgusting person in the world because there are days when I think it would be better if my mum went to sleep and didn’t wake up . That I would be relieved . Then I think how much I love my mum ( I’m crying writing this now ) and I don’t want her to die . I just want my mum to be my mum again . We are all human beings not Ángels good days and bad we just have to battle on .
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I so totally agree. I’m just beginning, 2 months in my home. 24/7 care. I’m exhausted the only memory care facilities we have are closed due to Covid. I want her somewhere that has the perfect care but I cannot put her somewhere and then not be able to go see her. Her personality changes and accusations and then childlike actions sometimes makes me want to scream. But I smile and keep going. My children do not have a clue they just think I should take care of mom. I’m not suppose to have a life. I hope you can find some support for you
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As a fellow caregiver...I just want to give you a BIG HUG and say I love you. 💝⚘
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