Stumbling in the Dark
(I've been bringing the Street Prophets diaries from Thursday and Sunday over here. I'm going to have to take a break and wanted to let you know why).
First thanks to mettle fatigue for covering Thursday's Coffee Hour. I just am not able to do it right now. It has been a rough couple of years and I am at critical caregiver burnout. On June 11th my brother heard a crash in my room. He looked in to see me unconscious and face on the floor having problems breathing. He can't get into my room with the wheelchair. He called 911. The next thing I remember is being strapped to a gurney being loaded into the back of an ambulance. It took several days before I remembered everything from my life except what happened.
The Doctor wrote it off as a seizure which I've never had. A CAT scan was normal. They didn't even do an EEG. He just said don't drive for six months.
I saw my regular Doctor and she says it was a stress breakdown. They have been afraid of that for months. She doubled the amount of Buspar and added an Ambien plus to see if I can get some sleep and keep from falling apart completely.
Right now I am extremely shaky. All I want to do is cry. I'm sleep deprived and as long as my mind is tuned in to make sure my brother is alright that is going to be a constant state. I feel like I'm running through the darkness with no light in sight.
I'm stressed enough as a caregiver. I have to juggle to get bills paid. The auto shop told me that because of the age of my car 1994 that we are looking at least $2,000.00 worth of repairs in the next year alone.
I talked to Social Workers who tell me that Reid makes too much money on disability and that I would qualify for help on my own but as long as I am his caregiver and have access to his money there if nothing that can be done for me. We could get him in respite care for him if we want to go through the process of getting him approved but we would have to pay $299.00 a day. They gave me a list of sitters that they can't vouch for if I want to try hiring them for a couple of hours. That doesn't do me any good.
So right now I'm stuck. No money to get the car fixed properly or get another one. Too many bills to pay to try and find a few dollars and go to the beach and relax for a few days. Right now all that is available for me is to just stumble on and try not to cry all the time.
I'm hoping people will be able to pitch is and do Street Prophets Thursday Coffee Hour and Street Prophets Sunday All Day Brunch until I can find some solutions. Marko the Werelynx can do a couple of the days but if someone can get the rest I'd appreciate it.
Comments
I am so sorry, Michele
Caregivers who are family members get treated like scum and shit by authorities, plus whatever frustration your brother vents, because you are the only safe one, his sister. Punching bag for all.
Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.
heartbreaking
A disadvantage of online community is that I can't just hop in my car and come over to help. Since you mentioned going to the beach, I know we don't live close!
What can your online community do to help you? I have some ideas.
Marilyn
"Make dirt, not war." eyo
I am horrified to read this
But more so that has made countless people across this country deal with what you are going through without the proper funding for it. I can imagine the how the stress is taking a toll on you since I saw my mom's husband go through the same thing.
And he tried to get help from caregivers, but they did such a poor job he did it himself. When I'd speak with him, he usually ended up crying because he was so stressed.
The rules for how much one person can have needs to be changed and more funds need to be added, instead of the insane amounts of money that is available for wars.
So, take care of yourself and your brother and I hope that things get better for you soon.
The Washington Generals should probably sue the Democrats for copyright infringement.
What can we do for you, Michele?
$$ comes to mind. Shall we do a fundraiser?
Thanks
Anything would help. I sell jewelry and artwork if people are looking for gifts. If someone wants to do a fundraiser so I can get the car fixed properly that would be great.
Just knowing people care helps.
A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde
Do you still sell your Jewelry?
My wife loved the necklace I got for her from you.
"You can't just leave those who created the problem in charge of the solution."---Tyree Scott
Jewelry
I still sell my jewelry and scarves off of my website.
I sell my art and photography on my Fine Arts account.
A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde
You should see some action on your website.
I sent the address to my daughter, along with permission to use funds from our common account. She loves shopping, anyway!
Life is strong. I'm weak, but Life is strong.
I call dibs on the steampunk My Eyes Adored You necklace!
I sent you an email.
Still looking, but I definitely want that one. I might give it to my daughter; but I like it so much, I might just keep it!
Just sent $ via PayPal, Michele. Great stuff!
Had to call PayPal twice last night, and gave up until this morning. But, I received a confirmation email that the funds went to you.
Sometimes I put my nose into places it doesn't belong,
but I can't help myself. IANAL, but I worked for the welfare dept determining eligibility for food stamps (SNAP, now), and I personally had a child on SSI for a few years. Here's what I know:
If you are taking care of your brother's money, you not only don't "have access" to it, you have a fiduciary responsibility to account for how you spend it for his needs. You could probably charge him for your service, but you probably don't want to do that. There are agencies that do that service, and they get paid handsomely. So, whoever told you that you need to count his income as your own is incorrect. Also, for SNAP, if you "purchase and prepare" food separately (that's the bureaucratic way it's said), you can have a food stamp case separate from him. That means, if either of you have a special diet, you "purchase and prepare" separately. Also, since he's disabled, that makes it even easier to separate food stamp cases. If this is helpful to you, try applying for SNAP. The worse that can happen is your case will be denied. But if it's approved, it may provide you with enough to take some of your burden away. Also, you may be eligible for LIHEAP to help pay for utilities. If they're out of money this year, they get their new money every October. I hope this helps.
Take two aspirins and
call me next month" is about the state of (what passes for) medicine these days. At my six month checkup a couple months ago, my "doctor" strolled into the patients room, peeked at his chart, glanced at me and asked, "any problems... ? Didn't think so. You look great! See you in six months... " The whole "checkup" (or more like holdup) took less than three minutes. Billed me $102 and said, have a nice day...
Go get yourself an EEG.
the little things you can do are more valuable than the giant things you can't! - @thanatokephaloides. On Twitter @wink1radio. (-2.1) All about building progressive media.
Time to find another doctor!
or bill him for your time he wasted.
" El pueblo unido jamás será vencido. The people united will never be defeated "
She is A Good One
She has been trying to keep me keep together along with the stress of being a caregiver. Her partner is Reid's primary doctor and she will get anything to Advanced Home Care to help him. The thing I need most is a break away from him for a few days while someone watches him which is where we are getting "he makes too much money" for a full time caregiver.
His Doctor and mine realize I'm at the breakdown point on Caregiver Stress. The medical field realizes it as a genuine problem but have done nothing to help the people suffering from it.
A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde
don't know if I can help, but.....
......do get the best advice you can about your situation. And be sure to get enough rest -- and that means both kinds, sleep and decompress time!
Having the OT is nowhere near as important as it is for us to have michelewln around, so tailor your online planning accordingly.
And know that the best of us are pulling for you!
blessings -- Sean
"US govt/military = bad. Russian govt/military = bad. Any politician wanting power = bad. Anyone wielding power = bad." --Shahryar
"All power corrupts absolutely!" -- thanatokephaloides
Are you eating well, hon? Iron deficiency almost planted me
on the floor once. Buy a multivitamin/multimineral and take it every day, generics work fine and do not cost much. That'll help cover what you might not get in your diet. See if that helps you feel a little better within the first month.
Please check out Pet Vet Help, consider joining us to help pets, and follow me @ElenaCarlena on Twitter! Thank you.
Known for My Cooking
I am actually writing a couple of cookbooks. I learned to cook heart healthy several years ago when Dad had a heart attack and Mom didn't know how to change recipes to make food healthier. Heart healthy also is diabetic healthy so I was able to take Reid from 104 pounds back up to 155 pounds where he should be.
A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde