Tell Us: What's Today's Discouragement?

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Tell Us: What's Today's Discouragement?

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A caree who declines, family members who disappear, a day that never ends. Caregiving can be so discouraging.

Today, what's discouraging for you?

Please share what's getting to you in our comments section, below. We understand and I hope it will help to say it out loud (so to speak) to us.

 

 

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Denise

It's so frustrating to put in the work to make improvements only to have the improvements just messed up. What you're doing for your mom's room sounds so lovely, Babs. Know that we so appreciate all that you do.

PigWhisperer

I want to run away, I am looking at RVs, trailers, anywhere I can escape from my nightmare of caregiving. I HATE IT. I served my time, I was there for my mom, and my dad. But now I, with no more living family or friends, not a single soul I can call and say, I need a shoulder, an ear, a hug, I am stuck with HIM I have called EVERYwhere! I have begged for help, asked for help, CRIED for help. But there is only HIM for the last 20 years and the last 6 have been HELL. I know for sure I do not love him. AT ALL. I LOVED my mom, and my dad, but not him. And I HATE him. Or maybe its the unnamed illness I hate, its probably a bit of both. AND I HATE NOT HAVING A LIFE THAT IS MINE. BUT since he is a veteran and since the VA doesn't give a SH*T about veterans getting a diagnosis is near impossible. Oh yes he has lots of labels, from kidney failure to non aggressive prostate cancer, but no label for what is going on with his brain that makes him ANGRY and HELPLESS. He can't remember ANYTHING. He is hostile and angry. He is abusive. His world is his bedroom, and anything that means he has to come out of that room and deal with responsibility such as making doc appts or scheduling rides or calling the pharmacy sends him into a RAGE. I have now installed cameras in every room. And told him. And made him sign something that says I WILL be recording EVERYTHING. But for what. A false security? Could he hurt me, not really, he is so frail and unsteady I could push him over with one finger. But words hurt. The snarling faces he makes hurt. The blame, everything is MY FAULT. His nurse calls and ITS MY FAULT. He gets blood from his recent TURP procedure and crap on the floor and ITS MY FAULT. There is a form he needs to fill out for his atty for his disability rating and it takes him 4 hours to scribble about 10 words and ITS MY FAULT, I had to suffer MANY OUTBURSTS directed at me in that time. Its my fault because he says I'm irritating him. I'm trying to explain that some things need attention and that only he can do and it doesn't register. He can't remember words, or uses make up words, he has failed many mini metals and passed them too, WHAT IS WRONG WITH HIM? MRIs show fluid on the brain, NPH, some docs have said parkinsonism, some say no, not a thing wrong. He throws his pills that I set up on the floor or hides them. The dog who I love so much more than him has accidentally (because he is like a vacuum cleaner) gotten them in his mouth! I HATE HIM.\r\n\r\nThere is no help. I've tried. I lived and breathed 4-6 hours a DAY on the phone with the VA. That ended with no help and a disaster. I've tried every social service agency, senior connections, elder services. I HATE HIM. I HATE the HATE I FEEL. He or his illness cost me everything I owned and my credit 3 years ago. Its been a long slow process trying to recover from that. Every little sentimental thing I ever owned, GONE. Half a lifetime of STUFF, precious stuff AND MY HOME, my furniture, even my shoes and clothes and pets and livestock, GONE. Yet I order him a pair of slippers online. Or a blanket. I don't even have a winter coat or sweatshirt for that matter. I HATE HIM. My glasses are broken and taped together, but he has new ones. I sleep in a blow-up camp bed with a slow leak, he has a brand new hospital bed. I contacted his brother, a nurse no less. He sent an angry email back. I provided a number and email where he could contact his brother directly. NEVER HAPPENED. He has sisters and a brother and 3 adult kids. WHERE ARE THEY? Nowhere. I have NO ONE. NO ONE. That's a scary word.\r\n\r\nI write NOVELS every time I send him to a doctor about his behaviors. They don't read them. Of if they do, they do nothing. I am his MPOA, DPOA, HCS...and I dream of the day I can just rip up that paperwork and say, its over. Today I carried a notebook around with me, I don't know why, but I did. I wrote down what tasks I was doing on his behalf and his reactions. My entries went something like this, \"Im trying to get him to call the pharmacy, he is screaming at me. He just made a very ugly face and growled at me. He is screaming FUCK YOU AND THIS AND THAT loudly, I'm glad the camera is on. 4 pm, he still has not filled out the form. He is saying its my fault. 420 pm, just took form into his room, he is on potty chair and there is blood and sh*t on the floor and he is calm. He does not understanding form and I need to fax it before 5. Im having to sit next to him while he tells me about the shit coming out of ass in great detail while I am pointing to ...x here, write in this box, sign here. Its SMELLED SO BAD. I had to get cleaning supplies. 1am, dog carrying bloody tissue in his mouth as he could not throw in trash. Even when I mark a container TRASH in big letters he throws on the floor.\"\r\n\r\nI HATE HIM. I HATE all they people who SAY THEY CARE and THANK YOU FOR YOUR SERVICE and DO NOTHING. I don't even get aid and attendance. I GET NOTHING. Not even a hug or friend to help me. I am completely isolated. I HATE HIM. And worse, I HATE ALL THE DOCTORS that he puts on this passive face for and I HATE their stupidity for not seeing past that. I have spent 5 HOURS writing in DETAIL his behaviors, and they see him for 9 minutes and say he's a little forgetful!?!?!? He can do NOTHING without help. NOTHING. That includes using his phone. Or WALKING. (ataxic gait) HE FALLS A LOT. I HATE having to get him up. HE won't BATH. HE WONT BRUSH HIS TEETH. I have none, mine are broken with no money for dental care. Today a nurse called on my phone, I took it to him, he stood with his pants around his ankles trying to walk to the phone, crap and blood running down his leg and I screamed at the phone, LADY, he is standing here covered in shit and blood and about to fall (as he refuses to use walker or cane or wheelchail) GET TO THE POINT OR GET OFF THE PHONE. I HATE being rude. But that is life now. HATE.\r\n\r\nWhere is there to turn when there is NO WHERE TO TURN? TODAY, I HATE HIM. And I hate the world who offers no help. I hate websites that promise help only to want $$. I HATE THE VA more than is perhaps humanly possibly, and I HATE MY LIFE. HOW can I escape, I feel like a prisoner. That was MY day. Just another one filled with HATE.