I'm still here.....in a prison without bars!

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My crazy life continues taking care of my mother. A grown man reduced to a prisoner, controlled by the life I was born into. Is it odd....absolutely! Is is strange.....totally! Is it crazy.....yes it is! If by chance I get to get away by myself for an hour.....it is such a relief. It rejuvenates me for a short while. I know my life is not a 'healthy' life, but like the song says.....'i'm caught in a trap, i can't get out'! Yes, I want to care for my mother, but why does it have to be this crazy? If all sons and daughters did what I did......there would be many unwed and unemployed people around. Just picture people saying, "I can't go to college and get married because my father died when I was 15 and I have to care for my mother the rest of her life". It's crazy! Picture staying in the house almost the entire day. We might take a ride out the road for an hour or so and then come home. I have to be a constant guardian to my mother and trust me.....it gets old real fast. As I've said in a previous post, I never cared about marriage, but does that mean I had to have this lifestyle. What about my life? Is it fair to me? My life is on hold and I'm getting older. Where do caregivers draw the line? Do we sacrifice our lives so that another could have a life? That is what I'm doing. Is it crazy.....yes it is....very much so. Sometimes I ask myself......why me! My sister who live out of the area offer no help. No one knows but me what I go through.

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Caregivers are understood by other caregivers there is no doubt,
and misunderstood by the others, money constraints mean we carry a tougher load,
our 86 year old sold her house via court actions now has a small nest age that the court refuses to pay us, her caregivers but will pay everyone else.

Who would think something like caregiving
would separate the mice from the me,
meaning, you have to find your family
wherever you feel comfortable and where the heart is, so is home.

They (bank court order) pay for daycare twice a week (for 12 hours total at 200.00)100.00 each day, they won't skip the day care and pay me the 200.00, because she cannot qualify for medicaid, if your people qualify for medicaid, they also qualify for cash and counseling a program that pays people to be caregivers including their own family members.
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SA the caregivers here usually ask questions about their charges rather than help for themselves. When we are privileged with an insight into the caregivers personal life from what I have seen the answers are helpful and compassionate.
I agree that the majority of caregivers except professionals don't initially enter into the roll voluntarily or at least if they do they don't and can not anticipate the difficulties and sacrifices it will entail. Who thinks their sweet loving parent who has always had your best interests at heart will turn into a vicious hateful person.
The parent who would never leave their room without being properly dressed comes out of the bathroom hair awry wiping their poopy hands on their pants five minutes before you have to leave for the Drs. you can't even use the bathroom to do your makeup you have to chase the parent who is already heading out the door to the car and he's left the door open and the dog is half way up the road. With tears of frustration running down you face you head to the phone to cancel the appointment. Dad will sit in the car for an hour before you can tempt him out and get cleaned up. SA people do get it they are all in the same situation their addresses are just different butt heir bank balances take the same hits. The rich make different choices much earlier. they can afford "companions" for elderly parents and later nurses. A separate cottage in the grounds or an apartment nearby. Expensive city Drs will make a home visit if you pay them enough. Do you think Queen Elizabeth's mother sat in a Drs office or the Queen goes in for her annual physical. Prince William was the first heir to the throne to be born in a public hospital. How about the President his Dr travels with him. No doubt the President's MIL gets treated in the White House.
Roscoe admits to having the money that can enable him to make different choices. He has more choice than the majority of caregivers. Caregivers are valued and admired. When their journey ends their lives will be forever changed even if they escape the depression and PTSD. Yes I mean PTSD that's why so many hospice nurses burnout. I did not realize it till I had actually retired that I wanted no further contact with hospice and still will not even drive past the office. For months I jumped every time the phone rang.
May be caregivers are only appreciated by other caregivers?
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As for the adult daycare, contact your loved ones medicaid to see if they cover it in your area. Where we live, my grandpa's medicaid covers up to 5 days of his adult daycare and his breakfast, lunch, and snacks. We are blessed it covers it because all the other daycares I've contacted won't accept medicaid, only private pay, because they won't profit as much.
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To all caregivers reading this post. Please if you haven't already, consider taking your loved ones to adult daycare so they can be watched while you work and/or get respite for yourself. I take my grandpa to adult daycare and its been a lifesaver for me so I can continue caring for him. I got the idea of adult daycare from this site! I can't thank you enough for that suggestion because before that I did not know what adult daycare was for.
I get hardly any emotional support from the rest of my grandpa's relatives. They don't even ask me how I'm doing or ask if they can help me. My parents and my aunt they gossip about me and they don't have any idea what its like. My mom and my aunt are my grandpa's daughter shame on them for gossiping about his granddaughter (me) for feeding him, giving his meds, making sure he brush his teeth and using mouthwash, driving him to and from adult daycare, give him activities, make sure he bathes, cooks and prepares his meals, shame on them for gossiping about me that is why I'm estranged from them. Only my grandpa, me and my son I consider is my family as well as my grandpa's nurse she comes once a week to bathe him and ask me and my son how we're doing and she spends time with us like a grandma bless her heart she reminds me of my grandma who passed away last year so loving and kind that's why my grandpa loves this nurse very much and always looks forward to her visit. Sometimes the kind of help we need doesn't always come from your relatives it comes from other people that you can consider your "real" family.
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I have to agree with the part about caregivers not being given consideration. My MIL could probably stand to go to the NH and I know she'd be much better off. She went to rehab twice and I could see the difference. She was thriving there. I guess she did so well they felt like she could go home and so they sent her home. Had she not signed her property over to my dh, she probably could go to the NH tomorrow and Medicaid would pay for it. But there's a catch. Medicaid would more than likely come after the property after she was gone and we live on the property. So where would that leave us? More than likely out on the streets, still paying on our mobile home, with no means to move it somewhere else and nowhere to move it to. Not sure if the "caretaker child" exemption would apply to us since we don't live WITH her, just on the same property. Now we don't have to worry about Medicaid taking the property, but there's that pesky transfer penalty to worry about if she went to a NH, so where would that leave her? She'd be penalized for roughly about 6 months I think.

I'm looking after her the best I can but I don't know what we'll do when she absolutely cannot live by herself anymore. Living here with us is not an option. We don't have room for someone to move in with us and I've got my kids to consider. They're 3 and 7, hardly able to look after themselves. I can't sacrifice their well-being for my MIL and she doesn't want me to. She doesn't want to live anywhere else but in her own home. She wants someone to move in with her to take care of her.
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Bermuda, I understand what you're saying. I guess it just comes down to just how much people are willing to take and what they're priorities are. In my case, it literally came down to my mom or myself....I had given her over a decade. I went into care giving when I was still pretty young, about 36 or 37. I'm 48 now. I thought, my God, is this ever going to end? Am I ever going to be able to do something, anything, besides take care of my mom for all eternity? After that much time, it did feel like an eternity already.

We all agree taking care of the elderly around the clock is stressful. I can't even begin to describe what that kind of constant, non stop stress was doing to me, mentally and physically. My mom these last 3-4 years couldn't be left alone at all and her behavior was so hard to deal with that I lived in absolute dread of going to sleep at night even though I was worn out and exhausted. Why? Because that meant morning...and dealing with my mom again...would come all the sooner.

My mom started to become extremely agitated these last few years. Her mind was really going, and she seemed constantly restless. I found myself spending entire days and weeks, from dawn to dusk and beyond, trying to keep her soothed and calm. I tried tv, I tried music, I tried taking her outside, moving her from one part of the house to the other, you name it, and nothing could calm her for long. She needed almost constant attention every waking moment. She had no attention span for tv or anything else for that matter, couldn't read/comprehend books anymore, nothing. I finally found a half way decent solution and would give her various small items and put them on a table in front of her. She could spend a good couple hours rearranging those things over and over and over and it seemed that the repetition of it calmed her...but not for overly long. She'd lose interest in that, too, eventually.... Having to endlessly try and keep an alz patient distracted and calm and trying to figure out something, anything that she could do almost drove me mad. The energy that took out of me was ungodly. If I didn't do it, she screamed the house down and wouldn't stop. She literally shrieked from morning to night off and on. After the last few years of that, I feel like my nerves have been flayed raw.

It wasn't just the enormous amount of energy taking care of her around the clock took. It was that constant state of high alert that I was always on. I couldn't come off it. I remember once I went to pee, and by the time I got back into the room with my mom she had fallen out of the chair and fell on her glasses and got a gash on her eye, and she was screaming the house down... It started to feel so overwhelming, having to constantly, constantly be on top of her, never being able to walk away for even a few minutes without her losing her damn mind and getting completely uncontrollable and doing something stupid like trying to stand and walk, which she couldn't do anymore... I was twitching with nerves. I would hear a sound in the middle of the night and I was half way across the room and out into the hall before I realized I was even awake.

In my own situation, my mental state was so bad that I literally couldn't have continued to look after her if I wanted to. The kind of relentless need for constant attention that my mom had was grinding me to dust. I was so unhappy and miserable I felt like I was going to lose my mind if I couldn't get out of the care giver role.

And that's the ticket. If someone, anyone, feels like that, it's time, past time, to abandon the elderly to the state if that's what it takes to keep your grip on sanity. I literally felt I was a hair away from losing my mind. Everything in me was screaming 'danger'....danger to my mentality, danger to my health, danger to my well being, danger to my sanity most of all and for me at that point I had to listen. I had to do whatever was necessary to get my mom placed where she needed to be, in a facility with more than ONE person dealing with her needs around the clock. Paid pro's get to go home and can get the rest and break they need. I couldn't get a rest no matter how desperate I was for one. When a person literally expects to look down and see their skin cracking trying to hold back the pressure and feeling a stress so intense for so long that death seems preferable than having to endure it another second, then you know beyond any doubt that it's time to do what you have to do, at any cost. When your stress is so high that you don't care anymore, can't think anymore about anything else but making it STOP, when someone reaches that level of desperation, then they'll know it's time to do something and disengage from the care giver role.

No, it's not easy to abandon a parent to the state...although I've hardly 'abandoned' my mom. I can visit whenever I like and she's not far away. For me, it was the right, and only, thing to do. Sometimes it comes down to saving yourself.
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Look I was only remarking to the man who said he was in prison,
I am alone too, that is why am going to court to try and get paid.

That is why we were financially ruined,
I WOULD LOVE TO SEE A 'SITE FOR CAREGIVERS, BUT IT SEEMS NO ONE IS LISTENING!!!
that is why I am fighting this in court...

I am concerned about the elderly, but I am concerned about my future...too!
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Standingalone, just wanted to clarify what I meant by my trapped under a boulder post is just that leaving one's parent to the state can be an "extreme" action for some. And yes, totally justified action and the right action sometimes like in your case. I just wanted to encourage some gentleness in proposing very hard solutions to people. Like you wouldn't go up to that boulder guy and say, hey just cut your arm off and you'll be fine, why are you complaining about being trapped anyway?
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Just remember to everyone who are caregivers. You are like soldiers in the battlefield everyday. Trying to battle against the people who are in your bloodline, battle with fighting fatigue, battle trying to save, improve the quality of life for your loved ones. Wear your uniform! And maybe those frown lines on your face from how much you have/had to endure are like BADGES of HONOR wear those wrinkles proudly!
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Actually, I think there's plenty of info on elder care out there, Roscoe..I mean, we're here on this site all about the elderly....but there's hardly squat about the care givers. it's like we're all invisible. Everyone is so concerned about the elderly and getting them what they need and making sure that they're alright...but nobody seems too concerned about what it costs the care givers that do all the work and assume the burden. Nope, the elderly come first it seems, and the hell with the fallout to their caregivers. Nobody wants to talk about that little minor detail. It is crazy!
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