Glad I'm Not Alone

by Anonymous

I didn't manage to read all the comments, but knowing that I'm not the only person who feels like a monster is comforting. I live with my 76 year old dad who is still healthy and active and a 50 year old brother who has Huntington's. He moved in about 4/5 years at a time when I was breaking up with my fiancé. I wasn't consulted about the decision at all. My dad asked him to move in because his wife and children left him (literally in the middle of the night) and because he was showing signs of Huntington's.


Before him, I lived with my parents, my mom suffered from Huntington's for 22 years. So I already lived through this once.

The day I saw my brother's boxes in my living room is the beginning of my second nightmare or perhaps just a never ending one.

If my mother was bad, my brother is much worse. He took over our living room because we didn't have an extra bedroom, he used to take 4 hour long showers and my utilities bill used to be $400++ per month.

This went on for months until he broke the shower twice or maybe thrice and I just saw no need to replace it anymore. Eventually I restricted him to not taking out the shower head, he still did, then I restricted him to using a bucket so he resorted to sticking his head under running tap water... Usually for 4 hours sometimes 5.

Eventually, I turn the water pressure down so even if it's for 4 hours, it wouldn't be as much.

This has worked on lowering the bills so far. But now we have to live with low water pressure and dirty bathroom. My water heater is also gone as a result.

He can't control his bodily functions well anymore. We have a carer that comes once a week to bathe him. But other than that he's on his own.

He usually just splashes water or sticks his legs into the bucket and splashes around. Pee is usually on the toilet bowl or floor... Sometimes outside the toilet on the mat.

I no longer sit on the bowl, I no longer can without sterilizing it properly. I no longer care to clean, I sometimes don't want to wake up. I stay in my room, my dad stays in his, my brother stays in the living room.

I work everyday. I sometimes don't wanna shower because the bathroom is just filthy. Sometimes I come back and my shampoo is on the floor, or sometimes in a dirty bucket of water. I can't clean myself without cleaning the bathroom first.

And no one cares. My brother has an insurance claim that the doctor has certified that he is mentally unfit to claim. A legal guardian is supposed to take the money for him. My dad won't do it. He wants me to become the legal guardian.

The social worker wants me to be the legal guardian. My eldest sister wants me to be the legal guardian. do they know what being a legal guardian means??

I don't understand why... My dad is still here no? Isn't he by default the legal guardian? I'm the youngest in the family, single, not married.

My ex fiancé was living w me when my brother moved in. He very quickly said he would find somewhere else to live. During this time, our rs went bust for other reasons.

In the 5 years since I had another long term rs which also went bust. I just could not cope while coping with things at home... And I don't know how understanding a partner I can find.

I'm depressed. And now suffering from some recurrent mysterious infection. Probably from the lack of hygiene at home.

I can't watch TV anymore. I haven't for 5 years. My brother turns his own TV on to the max I have to turn it down all the time. Sometimes he turns it back up.

I have a cat. I think even my cat is depressed. He started to have recurrent bald spots.

I feel like the whole world around me is just waiting for me to do something. But I'm barely coping with my life, why is everyone looking at me to save them?

I don't earn a lot, so I can't really hire help. All the social worker does is help us apply for this financial aid that financial aid. Which I supposed helps.

But every time I ask if I can put him in a home and that doesn't go anywhere. It goes back to them asking me to be the legal guardian. They even suggested that his son be the one when he turns 21. I told them that's not fair to a young boy, they were very ecstatic that I thought so I guess they want me to still be the one.

There are a lot of different kind of hells, a lot of different kind of suffering, I don't understand this strong intent for them to force me to put my life on own for a life that is already withering away.

Am I cruel? Am I heartless? I'm crying as I type this because I really really really don't wanna do it anymore. I just want a clean bathroom and a toilet bowl I can sit on without having to clean it and hose it down first (sometimes there are stains)

My brother isn't entirely non functioning. He can still walk, talk, eat. He knows to ask for money or sometimes cigarettes or help with his phone. He can operate the remote. But things like shit stains and pee on the bathmat I find it on a daily basis.

I understand it's the illness but I can't take it anymore.

On top of all these, my other sister is also in the early stages of Huntington's. Her husband has basically abandoned her. She's now living with her in laws, supposedly with allowance fr her husband which he deducts to pay rent to his parents and claims that she should feel grateful.

She used to live overseas where her husband worked, but he duped her into coming back and sold their house while she was here. My other sister lives overseas as well, she's hardly back, hardly ever asked. If I do confide in her, she tells me about her marital problems.

At this point, I hate everyone, I hate myself. I don't even pray anymore. Maybe I even hate God a little. I know there are much worse suffering. I know.

Sometimes I see the news or someone who lost their arm I feel grateful I have all of mine. But this is so hard, how do I have a life while saving theirs?

I really don't know how and I have no desire to save them. I wanna save myself. Is this selfish? Is this cruel? Is this cold? Is this a sin?

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Get out
by: Anonymous

You mean nothing to them. If you can move out even to a studio apartment. Tell the social worker you are leaving and run as far away as you can.

If your father can't take care of his son, he needs to go to a nursing home type facility. I read so many stories like yours. Life is short and you deserve to have one.

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Online Help
by: Anonymous

There's a Huntington's Disease Society of America (hdsa.org). This organization has a lot of resources and information that may be able to lead you to something in the area in which you live or at least nearby.

You can find chapters, affiliates, centers, support groups, social workers, legal resources, in-home care, events, and the latest information on the disease.

At the very least you will be able to communicate with others who also deal with this disease and get emotional support from them. There are several online forums just like this website you can write to and share your story. One is hdlf.org (Huntington's Disease Lighthouse Families).

It sounds like you have nothing left to give to your family that has totally drained you, but please muster some strength just for you, to get some help.

The time now is to save yourself because no one else will save you, but if you take that first step to focusing on you and not them, you may be able to pull yourself out of this wretched mess and have some decent living.

The fact that you wrote to this forum shows that you haven't given up, you're still looking for help. That's a good sign.

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GET OUT!!
by: Anonymous

You're not "selfish" at all. Why do you even stay there? It's like a nightmare on Elm Street and, as long as you stay there, nobody else is going to step up to the plate and take responsibility.

LEAVE!

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If someone has not walked in your shoes, they do not understand,but GOD does
by: Anonymous

I will pray for you,but please know you gave all you could, which is all that you have. God is with you and now it is time for YOU so please give yourself that gift and be happy and selfish and live YOUR LIFE.

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I thought I had it bad
by: Kp

First - let me say you are not alone and you are not heartless and you DESERVE SOME HELP.

Why can't your brother be put in a halfway house - isn't he on Medicaid? Your dad should get a life and contribute to your household bills. If it was me I would leave.

Why are you the only one who should be responsible for your dad and brother and I have a feeling your sister in the near future. You need some help. I would have you come to my home for a nice clean bath or shower and a clean bed to sleep in if I could.

I think you should go to a hotel for one night.

Get out of that house. And take the cat with you. I read your story with my jaw on the floor. After reading your post I am counting my blessings. I am so sorry you have been saddled with this unfair burden - it's not fair and it's not right.

If the first social worker couldn't help you then find another one. Keep asking till you find someone who will help you. Also - I think he can actually commit himself to a hospital.

If you can convince him that it's the best situation for him it might be a solution. Of course he can then leave at any time - but it's worth a try. Ugh - I want to research this and help you find some assistance.

You need to keep trying to find some help - if you get sick - or so depressed that you don't care about yourself anymore what good are you to him - I'm so sorry. I really feel your pain.

I would probably run away - not such a bad idea when you think about it. Grab the cat and get on a train and just keep going - I will keep you in my prayers - about God. I've never been very spiritual and really not a believer in God.

But 9 years ago I was dx'd with Lung Cancer and I would pray every day and I finally found my faith - and now I can't imagine not having it to see me thru the hard times. They say let God and let go - go to church - you need to talk to someone who wants to genuinely wants to help you.

Stay strong. Make a plan. Get your brother out of your home. There are places that are equipped to handle him

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