I have lived at a psychiatric facility, called a specialized mental health rehabilitation facility, or psychiatric nursing home since 2013 here in IL. IL seems to be the only state that has such facilities. I have gotten great benefit from living here, such as constant medication monitoring, psychiatrists and medical doctors who come directly to the facility, 12 hours a day of case management/ mental health staff availability, and have been lucky enough to be under the care of the clinical director, who tries to make this place as nice as possible under the circumstances of state policy.
One policy I am hating more and more is the IL mandate that anyone in any kind of nursing home, rehabilitation facility or otherwise have all their SSI or anything else that counts as income, go directly to the facility as room and board and only get $30 per month!
At first this didn’t really bother me. I was too depressed to care. Then I realized how though staff will say they provide everything residents might need here that’s actually a lie. I was shocked when I found out they don’t provide shampoo or soap that I would consider any kind of good quality. They have soap dispensers like the ones in public restrooms with the same cheap quality soap nd you’re expected to use this for both your body and hair! It goes without saying that that just is not a workable solution to have the lowest quality cleaning products.
They do provide toothbrushes toothpaste and mouthwash but again extremely poor quality. I personally use an electric toothbrush because it’s best for my teeth, and of course need money for batteries.
Women will understand this next point. They provide pads for monthly situations and probably tampons, but extremely low quality. A one size fits all thing, and the size is very small. I made the nurse laugh when I picked up the pad and asked them, a male nurse LOL, how anyone with a normal period could use it!
And those are expensive like $7 per package!
Then there’s the food which I’ve blogged extensively about. I need to buy oatmeal, because I will not eat anything they serve for breakfast except on the off chance they serve pancakes, waffles or French toast. The oatmeal they have is total plain oatmeal and disgusting. For whatever reason, I get physically weak very easily if I don’t eat. So as much as I’d just like to skip breakfast I can’t. Then there’s the issue of a huge percentage of the food upsetting my stomach and I’m sure others. So I have to buy snacks, or order out more frequently than I would ever want just to stay like not physically feeling terrible all the time. They only provide one snack a day, at night, and they’re usually very hard cookies.
These might seem like small things but when you don’t have them it makes things hard. And I have heard of other facilities giving residents even less, not providing towels, less food ETC. But that doesn’t make it right.
My mom does add to what I get each month by $50 to $100 per month. Which I realize others do not have. Still it’s tough both on her and on me asking for money.
This situation has really hit home for me this week. As my readers and friends will note, I have been trying to take a trip on short notice. There is a conference in Boston MA, which is where I am from. Well MA anyway. And believe it or not I have not seen my family in six years. It’s all due to finances theirs, but especially mine. If I got even $100 per month, and they actually provided decent quality personal care items, food and other things I mentioned I could save up myself to take a visit long before now.
A huge part of my depression and anxiety since moving here has been that all my family will die and I won’t be able to see them. That might sound dramatic but it’s actually happening. Since I’ve lived here I’ve lost two grandparents the others are in their eighties and one is 94. Two pets, just lost our dog yesterday. My family is selling our house that I’ve lived in all my life. My mom is experiencing major medical issues that may or may not cause her to become a wheelchair user depending on how things go. I missed my sister’s high school graduation, all of her college years she graduates this upcoming year. Basically six years of family life the majority of which spent with this $30 a month policy which might as well be a locked door. It keeps me and others here, from doing absolutely anything beyond the minimal shopping trip. Many here spend the money on cigarettes and coffie and don’t have anything for anything else. Some do have family close by or the ability to go on passes to see various people, but many have no outside family, friends, have been here 15 years or more and will likely spend their lives here.
Seeing my family change and get smaller hurts me to no end. And there’s not a thing I can do about it at the moment.
I had registered for this upcoming mental health related conference in boston. I had started working on this trip due to the endless support of new friends and others. A huge anxiety for me though was the not knowing if my family could contribute at all. And then my dog got put to sleep last night. I’m not a dog person but he was a pretty awesome dog. And it really hit me that more and more of my family is dying, getting older and just plain changing. I can’t be the same family member that I could be if I lived closer or could plain just take a trip once a year. I do feel locked away from family and friends.
I canceled my registration for the conference but since last night the urge to somehow get to go is still very powerful. The new friends I’m making might lead me to a new life, or at least expand my life. Be people I could visit regularly and perhaps work with to figure out a living arrangement that works emotionally/ physically but where I am not locked away financially.
The take away for me is that this policy is basically traumatic. Keeping people from getting better and like building a life. And for people who say the community services or state programs to help people move out are the answer sadly they are very lacking. For people with multiple disabilities they won’t even talk to you. Nine times out of ten the person gets set up with services, and then services get lax or just stop the person falls through the cracks and then come right back here.
I don’t know what to do about my current situation. I feel so stuck. I know I can’t go back and forth around canceling and then signing up for everyone’s sakes but I just feel compelled to try and figure something out.
Below are my paypal and fundraiser links. If people could share or donate even $5 I would be so grateful. I will save the money and if not this next month then sometime soon will hopefully have enough to make a trip back to my home state.
This policy needs to change I just don’t know how. I think as caring as staff are, even the clinical director who I know is genuine, they really don’t get the toll of the financial restrictions we’re under and how it makes our lives very limited.